For starters, I’ve been having issues with my heart rate for over a year now. In the past, I’ve had problems with pericardial effusion and pleurisy a few times. My heart has almost failed twice within the past two years. I can’t remember exactly when, but I’ll say around…April of 2021? Is when my heart rate issues became worse. My resting heart rate is 76 - 88; usually, this is when I’m lying down or sitting for more than 20 minutes. When I sit up completely, my heart rate will go to 110 - 125 or 136. When I stand, it goes to the 140s or 160s. After showering, my heart rate hits 180 - 191. So far, the highest heart rate I’ve had is 198. My symptoms for the past few months has been stomach pain, brain fog, nausea, vomiting, headaches/migraines, dizziness, lightheadedness, random blurry vision that’ll last for up to 10 - 20 minutes, chest pain, shortness of breath, skin sensitivity, painful red patches on arms, leg swelling, painful/uncomfortable bloating, weakness, fatigue, a few fainting spells, and much more but I can’t remember them all at the moment. My current diagnoses are Lupus (SLE), Rheumatoid Arthritis, TMJ, and Raynaud’s syndrome.
Is anyone going through this or has gone through this? If so, what tests were run or recommended? Did you get a diagnosis?
I really need to know. I’ve been dealing with this for so long now. It’s interfering with my day-to-day life and daily activities. I can’t even talk or laugh without my heart rate going up to 126. The lightheadedness and dizzy spells are happening daily, and I’m afraid that I’ll pass out. The stomach issues I’ve been having have made it difficult and painful to eat and drink. It feels like my stomach is on fire 24/7 and being ripped open every once in a while. My doctors think I could have another possible autoimmune disease, either fibromyalgia or a connective tissue disorder (I dislocate almost daily). I’m not trying to self-diagnose myself, but I’ve been wondering if POTS could be another possible diagnosis? From what I’ve been able to research, the symptoms I’ve been experiencing are pretty similar, but I know Lupus can be the cause behind a lot as well. I also know that Lupus can be the cause of POTS. I just want to find out as much as I can to bring some things up to my doctors since they’re just as confused as I am, haha. I’m tired of dealing with this and need relief.
Some people just don’t understand how validating a diagnosis can be. Like with my parents, they worried that getting a diagnosis would be “letting it define me,” and that “there’s no point in confirming what we already know.” But having a professional sit down and tell you you’re not faking or overreacting is so relieving. Of course, there are downsides and not everybody feels the need for one, but if someone wants a diagnosis, listen to them.
This is a very personal comic, even though it’s not very long and doesn’t have many details. There were many opportunities in my life where my ADHD should have been caught, but I felt like I had been failed several times by the same professionals I had sought help from. It all boiled down to the fact they thought they knew me better than I knew me and therefore what I had to say was not deemed important enough to listen to.
It wasn’t until I started seeing my current therapist that I was actually allowed to speak for myself. At first it seemed to only confirm my Generalized Anxiety Disorder, but the more I talked, the more she began to realize that there was something else going on. One day she politely asked me to stop for a moment and point blank asked me “Bri, have you ever heard of Inattentive ADHD?” I had not.
What was causing these spells, and why were they now more frequent?
The 51-year-old man sat at his desk preparing for his next online meeting when he suddenly became aware of a familiar stiffness and exhaustion. Had he slept badly? Or was this the beginning of one of his strange episodes? As the symptoms worsened, he had his answer. He knew that when he started to feel this way, the only recourse was to get into bed before he got any weaker. As he made his way slowly down the hall, his legs felt heavy, as if he were wearing ankle weights. Just lifting them was real work. He passed his wife’s home office without a word. She knew just from looking at him that he would probably have to spend the rest of the day in bed.
For much of their 30-year marriage, he had these strange spells; he would suddenly feel exhausted and weak and have to lie down. He couldn’t work. He was a software engineer, and any mental exertion was too much for him. Once the fatigue fully set in — maybe after the first hour or so — he couldn’t walk, couldn’t stand, couldn’t even sit up. It was as if his body was totally out of gas, worse than how it felt when he ran a marathon. He would lie in a dark room, too weak to even hold up a book and too tired to think. But by the next morning, he would usually be fine, brimming with energy and enthusiasm, like normal. It was so strange.
After more than 20 years, they both had come to expect these episodes. For most of that time, the spells were infrequent, maybe once a month. But recently they became more frequent. The monthly episodes became weekly, then a couple of times a week. They often came, as they did that morning, out of nowhere. Just before leaving his office, he sent an email to the woman he was to meet online. Sorry, he wrote, I’m not feeling well. Could we reschedule?
Seeing a Psychiatrist
Over the years the man saw many doctors. They had their theories, but so far none panned out. A few were convinced that he had periodic paralysis, a disorder sometimes linked to thyroid disease, where patients become temporarily paralyzed by too much or too little potassium in the bloodstream. But his potassium was always normal, even during these episodes.
He had EMGs, looking for problems in the way his nerves communicated with his muscles: normal. He had EEGs, looking for problems in his brain. Those scans were normal too; he wasn’t having seizures. Out of desperation, he went to the Mayo Clinic. Doctors there repeated all the tests and added a few more. They had no answers, though they did suggest that he exercise more. He did, and that did help. Indeed, he came to suspect that the reason these periodic exhaustions became more frequent was that once Covid hit, his gym closed down and so did his trainer.
Time after time, he was asked if he was depressed. He didn’t feel depressed. But he started going to a psychiatrist just in case he was wrong. It didn’t take long for the psychiatrist, Dr. Sanjay Patel, to determine that the man was not at all depressed. Even after that diagnosis was ruled out, he continued to see Patel. It made him feel like a real New Yorker, he joked. At the very least, the doctor could listen as his patient tried to understand why he had these strange spells.
If not exercising could affect the frequency of these spells, so could exercising too hard. After a really long run, there was a good chance he would end up in bed the next day. Because of that, he thought for a while that he might have chronic fatigue syndrome, which is also known as systemic exertion intolerance disease (S.E.I.D.). But he usually recovered within 24 hours, and that wasn’t true for those with S.E.I.D.
At his rescheduled meeting, he apologized for the sudden change in plan. No problem, his colleague told him; she said that she had migraines that could come on suddenly and forced her to cancel meetings every now and then. The comment resonated with the patient. A few months earlier he saw a neurologist who said that these transient episodes of weakness sounded like migraines, but thought it unlikely because his exhaustion didn’t come with a headache. The man used to have migraine headaches — the pain in his head was throbbing and intense and was often accompanied by nausea and vomiting. These episodes of debilitating tiredness seemed nothing like those. Still, could these be related to migraines?
One Benefit of Online Meetings
At their next online therapy session, he mentioned the comments about migraines to Patel. The psychiatrist was intrigued. Could you have a migraine without the headache? Patel typed “migraine without headache” into a search engine and clicked enter. Reference after reference appeared for what was referred to variously as silent migraines or acephalgic migraines (literally migraines without head pain), usually describing a migraine that starts with preceding symptoms called an aura but then never becomes a headache.
Four out of five migraineurs may have symptoms that herald the onset of the migraine before the headache itself. The first signs often arrive with a change in mood, food cravings, light sensitivity or fatigue. One in five can have additional symptoms that are more localized and last anywhere from five minutes to an hour. The most common are visual, often with shapes that appear before the eyes and enlarge — but aura can also manifest as ringing in the ears or difficulty speaking.
Could the man’s day of exhaustion be the precursor for a migraine headache that never arrives? The more the duo read, the more convinced they were that this is what he had. Patel did a little more searching and referred the patient to a headache clinic in Boston.
Part of a Bigger Picture
The patient was able to have his first video visit with a headache specialist two weeks later. He described his symptoms and the timeline. It starts off with a feeling of malaise, he said — as if he were coming down with something. Then after half an hour, stiffness arrives in his neck and shoulders, sometimes even his jaw. Another half-hour later, the weakness kicks in and he has trouble even sitting up. But he didn’t get headaches and hadn’t for decades.
The specialist had been seeing migraine patients for more than 30 years and knew that migraines came in many shapes and sizes. What the patient described wasn’t an aura: It lasted far too long. It was as if he had a long episode of the preliminary symptoms but never quite got the headache. Moreover, he had a history of migraine headaches and, over time, a patient’s migraines can change so that they have many of the symptoms but not the headache. Indeed, experts in the field no longer call the disorder migraine headaches but rather migraine disease, because the headache is only a part of the bigger picture. And the way these debilitating symptoms came out of nowhere and then resolved completely was consistent with migraine disease.
There are no tests for migraine — it is a diagnosis made based on the patient’s story. The story this patient was telling didn’t make the diagnosis certain, but it was possible. To test the diagnosis, the headache specialist suggested that they try treating the episodes with medications that can stop a migraine from progressing. A new medication, approved by the F.D.A. just over a year earlier, called ubrogepant or Ubrelvy, had been effective for many. The drug blocks a protein that promotes the inflammation in the brain that is thought to initiate the process that produces migraines. When taken at the very start of the symptoms, it can stop the episode in its tracks. The patient needed no persuading. Anything that might free him from the unpredictable tyranny of these spells was worth trying.
The medication was life changing, the patient told the specialist at their next appointment. He took it when the stiffness was first starting to set in, and within a couple of hours, it was gone completely.
For decades the presence of the typical headache was the defining quality of migraines. Experts like the one who saw this patient now recognize that migraines can change over time so that sometimes they aren’t even headaches anymore.
I thought getting an Ehlers Danlos Syndrome diagnosis would be straightforward because of the Beighton Scale, but boy was I wrong.
My rheumatologist said that my skin matched the criteria for EDS, but she didn’t think I was hypermobile and didn’t think I had EDS after examining some of my joints.
A few months later my pulmonologist, who sees a lot of POTS and EDS patients, examined my skin and my joints and said I was hypermobile. He said I probably had EDS and referred me to a geneticist.
I mentioned my hypermobility to my cardiologist, who also sees a lot of POTS and EDS patients, and he examined me and agreed that I’m hyper mobile. He went on to say, though, that I “don’t want an EDS diagnosis” because the symptoms of EDS are hard to deal with. I wanted to tell him “yeah, I know, because I’m dealing with them” but I kept my mouth shut.
Three doctors shouldn’t have three different opinions about what my diagnosis should be.
I wish healthy people understood that getting a diagnosis ≠ getting an effective treatment.
There are so many chronic illnesses for which there aren’t very effective medications or therapies. Even if your chronic illness has a few good treatments available, they might not work for you, or they might be out of your reach because your doctor won’t prescribe them or your insurance won’t cover them.
If you do find a medication or treatment that works for you, it might only alleviate some of your symptoms and restore part of your function. It might come with unpleasant side effects that interfere with your life in new ways.
Chronic illnesses are complex, and treating one is never as simple as getting a diagnosis and being prescribed a pill that fixes everything (or even helps).
I started therapy on the 23d of July 2019. I was 35 years old at the time, and I had decided to go into therapy for the following reasons:
I felt permanently exhausted
I felt like somewhere during my adult years I had slipped into a depression I’d never gotten out of and I wanted to feel happier in life than I did at that time
executive dysfunction - I still need regular help from my mom to keep my household in order
I lacked any and all ambition to do anything with my life
I had begun to suffer from anxiety and sometimes tiny anger outbursts which were occuring more often than before, which was a sign to me something was wrong and only getting worse as I aged.
I had tried seeing a psychologist when I was 30. It was a man who I disliked so much that after 2 sessions, I ghosted him. I could go into more details, but let’s just say he was not a match for me.
It took me five years before I gathered enough energy and courage to try again. In a way, Tony Atwood helped. I’d stumbled across his videos on Aspergers in women and I’d begun to think that maybe it was Aspergers then. The above symptoms would not be misplaced in a women my age with Asperger - and it was until I got my diagnosis two weeks ago, on the 8th of May, that I was bracing myself for an Asperger diagnosis.
When it turned out to be Schizoid Personality Disorder, I was like: “I’m a what now?”
But kudos to Tony Atwood’s videos for at least encouraging me to seek help and to approach a possible diagnosis with optimism. Even if it’s not Aspergers, I needed that little push in the back.
“April 19th: How do you feel about self diagnosis?“
I wish it had been more widely accepted or even encouraged. If I’d been validated or at least guided on my mental health problems as a teen, then so-called “mental health professionals” could have at least considered the possibility that I was autistic.
Instead, they left me with some bullshit about “hormone imbalance” without saying exactly which hormones are out of wack. (And it turns out they missed on my PCOS diagnosis as well. Some “doctors” they are.)
From the present onward, let those who question whether they are autistic find some answers for themselves, with less institutional biases and societal shame.
“But what of the shitty people who proclaim that they are autistic -”
It’s like left-handedness, isn’t it? Oh, suddenly so many left-handed people, suddenly so many people on the autism spectrum. Back to society blanket-stereotyping people for physically being unable to conform.
If a left-handed person is shitty, it’s because they are assholes from the start. Being born left-handed (or autistic) is something innate and separate from morality, but being a kind or crappy person is a choice. Let people self-diagnose, and don’t generalize entire subsets of neurodivergent people, for goodness’s sake.
Alright y’all, I need some help. My rheum is saying that there is no chance I have lupus and that I have fibro but I don’t agree at all. My symptoms just aren’t explained by fibro or really many other conditions:
- Butterfly rash
- Brain fog
- Joint pain
- Mouth sores
- Photosensitivity
- Anemia
- Chest pain/inflammation
- Protein in urine (proteinuria)
- High ANA titer (1:1280)
- Homogenous, speckled ANA
I was told “20-30% of the general population has a high ANA like that.” I waited months for my appointment and was told to come back in 6 MONTHS for a follow up since “nothing was wrong.” She promised to send off referrals for an endocrinologist and PT and we waited another few months before finding out she never sent off either and the physical therapist she referred me to doesn’t even exist. I’m so frustrated. What do y’all think? Should I seek a second opinion? Do I even bother fighting for a lupus diagnosis? I’m just so tired of all this. First it was “just my depression,” then it was “me making it up,” and then “me not drinking enough water.”
Especially when writing in a modern real-world setting, one thing to take into account when thinking about your autistic character is their diagnosis status. Diagnosis might sound straightforward, but there are actually many things to take into account when talking about it. In this masterpost, you will find factual information about diagnoses - how they work, what they look like concretely, what are their shortcomings as well as some words about self-diagnosis - and questions to ask yourself when writing your autistic character.
What is autism, officially?
Autism is a complicated concept and we spend the majority of our time on this blog trying to explain it in a nuanced and multifaceted way. If you haven’t read it already, we suggest reading this masterpost about how to write an autistic character. Another post we have helps specify what autism is; this post describes different functioning labels and why they aren’t particularly beneficial or useful. The main thing to understand about functioning labels in the context of diagnosis is, generally, a diagnostician is required to specify levels of functioning in an autism diagnosis. The autistic community has a rather large definition of the concept, while the “official” definition of who counts as autistic is somewhat narrower.
Diagnosing autism is often a difficult process. Since we don’t know the source(s) of autism on a biological level, we can’t do, for example, an easy test like a brain scan to check for autism with absolute certainty. As a consequence, a professional who wants to know whether or not someone should be diagnosed with autism will look at that person’s behavior first and foremost, and, if possible, will ask questions about their subjective experience. As a result, the diagnostic criteria focus exclusively on the person’s behavior.
Here are the DSM-V criteria, and here is a link to a PDF which lists stereotypical examples for each of the criteria. The DSM-V is used in many countries around the world as a reference to diagnose mental illnesses and other conditions, in most cases these are the criteria that will be used during diagnosis. Other classifications with other sets of criteria exist, such as the CIM-10 (which still recognizes Asperger’s Syndrome and autism as separate diagnoses), are still in use in some countries.
A brief history of the DSM
The DSM is meant to describe all known mental illnesses recognized by the American Psychological Association’s (APA). There have been five editions to date, and many changes have been made to which disorders and mental illnesses are considered valid and their criteria. These changes were made in response to new research about the mind in general or about specific disorders.
The DSM is written based on research published by mental health professionals (practicing therapists, psychology researchers and students of researchers, psychiatrists, doctors, etc.). To get research findings recognized by the APA, the findings must be replicated enough times across published literature that any reader can be confident in the conclusions made by researchers.
If enough research emerges which prompts the board of the APA to reconsider the way the criteria in the DSM are written, and enough criteria are changed that the current edition stops being clinically useful or relevant to research, the DSM gets rewritten, and a new edition published. There are many debates about what criteria to include and which diagnoses are considered valid. Some diagnoses are added, removed, or changed in new editions of the DSM. The currently accepted edition of the DSM is the DSM-5 (or DSM-V).
In the DSM-5, there were several major changes, including grouping together Asperger’s Disorder, Autism, Pervasive Developmental Disorder Not Otherwise Specified, and related disorders into the broader category of Autism Spectrum Disorder. Some people were diagnosed with, for example, Asperger’s Disorder before this change was made, but would now meet the criteria for Autism Spectrum Disorder. They do not need to get re-diagnosed, and mental health professionals can still take their diagnosis into consideration.
Here are some things to consider :
When and where was your character diagnosed? What was the diagnostic manual used during their diagnosis, and how does that affect their identity? You might find part of our functioning labels masterpost about Asperger’s Syndrome useful for more detail about this specific diagnosis
Which diagnostic criteria does your character meet? Are there some criteria they don’t meet? How did that influence the diagnostic process?
How diagnosis works
Diagnoses are given when someone comes to a professional/clinician with experiences causing them distress or impairment. Depending on the country, there are multiple professionals qualified to give diagnoses - doctors, psychologists, psychiatrists, for example - and they have to collect evidence in order to make diagnoses. In order to do so, some researchers develop tests to help check whether someone meets diagnostic criteria, and standardize them to large groups of people to make sure the tests are valid, i.e. truly measure what the researcher wants the test to measure. These tests are then used to determine whether or not someone can be diagnosed, that is, whether or not they meet a sufficient number of criteria.
In general, a diagnosis is given if someone meets a certain number of criteria within the list. For an Autism Spectrum Disorder diagnosis, someone must meet the criteria of “persistent deficits in social communication and social interaction across multiple contexts” and “restricted, repetitive patterns of behavior, interests, or activities.” They can meet these criteria currently or in their history, and the DSM-V mentions symptoms may be masked later in life, but must have shown up during early development. The symptoms must also cause distress or impairment and must not be better explained by a different disorder.
The diagnostic process itself can vary from country to country. Typically, there are two main phases to a diagnosis: first a screening, and then a full evaluation.
If parents, teachers, healthcare professionals or the person themselves suspect a child or adult is autistic, they will go to a professional, usually a pediatrician, psychiatrist or psychologist. Different screening tools can be used, depending on the context and the age of the person to be diagnosed. They include questionnaires filled out by the person or their relatives, guided interviews or short tests in which the person is asked to demonstrate a variety of behaviors. The Autism Quotient is an example of a screening tool for adults, the M-CHAT is a screening tool for children. You can download these tools as well as others on this page. The screening is usually a short process that doesn’t last more than one hour. Different tools are used for children and for adults. In some places, children may be systematically screened at a certain age, at daycare, school or at a well child appointment.
If the screening shows that there is a possibility that the person is autistic, they will undergo a full evaluation. This evaluation is usually done by at least one, but up to a team of professionals which can include psychiatrists, psychologists, nurses, speech therapists, occupational therapists, psycho-motor therapists, etc. This is where the standardized tests are used. In most cases, the person will have to take at least a cognitive test (IQ test) and a test more specific to autism, in which their abilities in the domains of communication and social interactions, as well as specific autistic traits, are recorded, such as the ADOS. Here is a video where you can see an example of an ADOS test for a child. Family members might be questioned about the early childhood of the individual as well as their daily life. This phase of diagnosis is a lot more involved and can span several days.
After diagnosis, the professional will meet with the person who was being diagnosed and/or their parents to explain the results in detail. This is also usually the point where treatment/management plans will be discussed, focusing on the areas of need discovered during diagnosis. For example, if the person showed lots of sensory difficulties but no problem with speech, they might be advised to go see an occupational therapist rather than a speech therapist. This is a link which discusses what a diagnosis process can look like for an older child or teenager.
This description of how diagnoses are given does not have to match your story, especially if the setting is different. It’s a guideline, and you can do more research and thinking on what this process may look like in your story. Here are some questions you can consider during this process:
Where does your story take place - a certain country, a different planet, a fantasy setting? Are there mental health professionals there, or some kind of doctor? If the place exists, what diagnostic processes are common there? If it doesn’t, what can you imagine a diagnostic process would look like? Is their concept of autism similar to ours? What are the differences and how do they reflect on the diagnostic process?
When is your character diagnosed? If on earth, you may look up what mental health resources were available in the past, or imagine what mental health resources would be available in the future. If somewhere else, how do you imagine diagnostic tools evolved? Are there diagnostic tools at the time of your story? Is someone trying to build a process of diagnosis? Do the clinicians in your story know what autism is?
If the character being diagnosed is a child, how well do they understand what is going on and happening to them? What have they been told about the testing? How do they feel about it now, if you’re writing from the perspective of an adult reminiscing?
How do they feel during diagnosis? Are they scared? Overwhelmed? Do they find the testing difficult or easy? What do they think of the professionals diagnosing them?
What are they told about their diagnosis after the testing? How do they feel about it? Do their feelings change over time? Is any treatment/intervention/therapy plan started? If so, how does the diagnosed person feel about this process? Does it help them? Does it stigmatize autism?
The mess of professional diagnosis
Diagnosing autism is very difficult, for several reasons:
There’s huge territories of symptom overlap and comorbidity between autism, ADHD, dyslexia, and other neurodivergences, which makes differential diagnosis complex and not always successful.
Individual autistic traits, such as atypical social communication, sensory problems, executive dysfunction, etc. may also be seen in an individual without them being autistic.
Autism diagnosis is based on behavior and on external observation of this behavior. Its neurological sources aren’t clear and there is no easy, yes-or-no test. A lot will depend on the subjective point of view of the diagnostician, even though standardized tests help make the process more consistent.
Many people have learned to mask and hide their autistic traits, potentially making outside observation of these traits - if necessary to the diagnostic process - more difficult.
Autism has been studied more and is more well-known in some subtypes of the population (i.e. white, male children). That stereotype frames the public mentality, and that affects the mentalities of psychologists and neurologists studying and diagnosing autism. People that don’t fit this archetype may have a harder time getting diagnosed.
Diagnoses are made to be standardized enough that people halfway across the world will, hopefully, be talking about the same disorder or disease as a different doctor/psychologist/researcher. This is usually a good thing, but it can also mean that some people who have more atypical profiles (because of unusual identities, comorbidities, upbringings…) can sometimes be missed during the diagnosis process. It is also worth keeping in mind that the criteria evolve very regularly; someone who isn’t included now could be in ten years, and vice-versa.
People change. Someone who would have definitely been diagnosed as a child might not fit the criteria as an adult. This doesn’t mean they’ve stopped being autistic or been “cured”, it just means their traits have evolved as they’ve found better coping tools. Whether that’s the case or not, getting a diagnosis as an adult is often a lot more difficult. Not a lot of research has been done about what autistic adults are like. There can be fewer groups of mental health professionals open to giving autism diagnoses to adults; these specialists are less knowledgeable about it, and might be reluctant in many cases to give a diagnosis that could be marginalizing for the person.
These are all reasons that make diagnosis difficult and could lead to a misdiagnosis (or even to a refusal of even starting the diagnosis process). Misdiagnosis in very, very common, especially in women and in people who were diagnosed as adults. This is one of the many reasons that could lead someone to self-diagnose.
Something to take into consideration is the history of autism in the DSM, and how mental health professionals may use or misuse it for diagnosis. Originally, autism was thought to be a different form of schizophrenia (sometimes it was called Childhood Schizophrenia) because the children brought to clinicians for evaluations were noticing and being affected by sensory experiences which most people weren’t. Eventually clinicians noticed the diagnosed individuals did not truly meet the criteria for schizophrenia, though even today clinicians still confuse these diagnoses.Many autistic people can meet criteria for ADHD, and some people mistake the hyperfixations and sometimes rigid preferences of autistics for obsessions and compulsions of someone with OCD.
Here are some things to think about:
Was your character’s diagnosis story straightforward, or did they have to undergo misdiagnoses and referrals before finally being diagnosed? (Common misdiagnoses are OCD, ADHD, BPD, or schizophrenia, though these can also be co-morbid)
Did their symptoms look to a diagnostician like they could meet a diagnosis different from autism? Did your character have any other psychological conditions which affected the diagnostic process?
How confident was the professional making the diagnosis? Did any of your character’s identities, comorbidities or behaviors make diagnosis more difficult?
The process of self-diagnosis
Some people do not have access to a professional diagnosis. Some examples of barriers to diagnosis are:
Doctor/psychologist visits and hours spent evaluating can be a very expensive process, and not everyone has insurance or enough money to pay for this.
Some parts of the world do not have enough medical care available to people because there are not enough doctors for the population. Long waiting lists and overworked doctors may prevent someone from wanting to seek diagnosis. General doctors may not specialize in psychology, and feel under-prepared to properly screen for autism.
Many people have learned to mask their symptoms. There are many pressures from society to fit in, and autistics are often forced to learn to look “normal” - by parents or peers. Many who have learned to mask have a hard time relaxing and acting more naturally.
Some clinicians have very conservative screening standards and refuse to evaluate if a client/patient does not meet expected criteria for the screen (i.e. missing social cues, avoiding eye contact, “atypical” vocal patterns).
While professional diagnosis can be validating and provide a path to accessing resources and accommodations, some do not want a professional diagnosis at all. Usually the reason someone might avoid receiving a diagnosis is stigma. If a parent or other adult is responsible for and has access to the individual’s healthcare records, they may not trust that person to treat them well. They might be afraid of discrimination or disempowerment by healthcare providers, workplaces and the government (for adoption for instance). They may feel isolated if they receive the diagnosis. Others may not want it because they feel confident in their self-knowledge and want to avoid the expense. Parents may avoid getting their children diagnosed because they don’t want them separated into different classrooms in school, or may not have the money for healthcare.
A person seeking self-diagnosis may have an experience which gets them thinking about autism and recognizing themselves in that label and people associated with it. For example, the individual may have met someone autistic and related to them like no-one they had ever met before. Perhaps a caregiver anecdotally mentioned to them it was a possibility. Finding the diagnostic criteria for autism spectrum disorder is relatively easy online, and some start by reading about the criteria. Most people who self-diagnose spend a lot of time researching autism as well as other neurodivergences, reading writing by autistic authors about their experiences, taking tests online, etc. Some self-diagnosed autistic people may end up knowing as much, if not more, about their condition as most professionals.
Self-diagnosis also usually comes with a lot of self-doubt, “impostor syndrome” and changes of mind. Lack of recognition by healthcare professionals, lack of access to accommodations and benefits, and gate-keeping are all experiences frequently associated with self-diagnosis.
If your character is self-diagnosed, ask yourself :
Why isn’t your character professionally diagnosed? Do they wish to be one day? Have they tried to get a professional diagnosis without success? If so, how do they feel about it?
How confident is your character in their self-diagnosis? Did they do a lot of research? How did that make them feel? Do they have an accepting community, whether locally or online? Do they have to deal with others gate-keeping because they lack an official diagnosis?
Are there some accommodations, therapies or benefits your character needs but can’t obtain without diagnosis? How does it impact their life?
Diagnosis & Identity
Think about your character’s journey with diagnosis, and how it impacts their identity, how they feel about themselves and how they think of themselves.
At what age were they diagnosed?
Did they have an active role in the diagnostic process; did they seek it out? Did they accept it or resist it?
How did their diagnosis or lack thereof affect their education/work experience? Did they receive accommodations? Were they kept from doing certain things because others believed they couldn’t?
How did their diagnosis or lack thereof affect the development of coping skills?
How did they learn about autism? If diagnosed as a child, were they told about their diagnosis? In what terms? If not, how did they find out? How did it make them feel? What impact did this have on their choice to identify as autistic (another way to think about this was, were they in denial because of shame or some other reason, or did they rejoice in finally having an explanation for their experiences? Or something in between)? How did they react to their diagnosis or lack thereof?
Who, if anyone, are they comfortable telling? Did anyone find out who the character didn’t want to know? Did their parents tell someone, if applicable? Does anyone know about their diagnosis/identity, officially confirmed or otherwise?
Do they interact with other autistics - online or in person? Do they have autistic friends? Do they feel part of a community, autistic/neurodivergent or otherwise?
What makes them feel included or not? What makes them feel similar or dissimilar to other autistics, or to the stereotype of how autism is perceived by the public and/or their community?
Are there moments of doubt about their diagnosis?
If officially diagnosed, how long did that process take? Are they currently seeking diagnosis?
Does your character encounter stigma as a result of their diagnosis or lack thereof?
These questions can help you think about your character’s experience. Diagnosis is tricky business. I hope this provides some nuanced ideas on diagnosis of autism and autistic identity.
i’m just now realising that there are names for these things i’ve been feeling for years- camhs really is doing something something for me after going through like 3 therapists but if i get one more diagnosis i’m gonna cry
After nearly a month, I’ve returned with another blog post.
I’ve had a few interesting therapy sessions in the meanwhile. It turns out I’ve also got severe depression along with my schizoid personality disorder. Next session we’re starting with EMDR – which is eh… something I don’t fully understand myself - yet. I’ll gladly talk more about it once I have a better idea of what it actually does. It sounds a little bit like hypnosis, but not fully, and it would probably be considered an insult to the practitioner to label it as hypnosis. I might write about it in an upcoming blog post.
But for today, I’d prefer to stick to a topic I understand better. Solitude. Loneliness. The two are not the same for many schizoids.
The shortest way in which I can put it, is to say that many schizoids don’t experience loneliness when they’re alone. But they might feel it when they’re in a group.
Let me elaborate.
The definition of Loneliness according to Google, might already offer some insight:
Loneliness; sadness because one has no friends or company.
You often hear loneliness described in old people. They’re in a home, they get no visitors, and they are lonely. Or people who lose their partners then die of loneliness because suddenly they are physically alone and cannot bear it. They ache in the absence of others.
For the majority of people, being the only person in a house could trigger feelings of loneliness. With covid-19, many people that were in lockdown also felt terribly alone because they could not see their colleagues or visit random friends whenever they wanted to. They complained about the loneliness and lost productivity and some parts of their sanity as a result.
During the lockdown, I felt better than I had in a very long time. Not seeing friends or family gave me an energy boost. Then the lockdown restrictions were slowly lifted, I got to visit family again, got to see colleagues again, and the energy boost is gone again.
My brain is perfectly content being alone for weeks in a row. I do not experience loneliness when I’m at home. I do not cry myself to sleep at night because I feel lonely. I do not long for companionship or make plans to invite friends the moment I can – far from it. I didn’t do that before Corona so why would I do it now?
Yet the concept of loneliness is not alien to me, nor is the feeling.
I have felt overwhelmingly lonely at festivals and parties, in the midst of both strangers and friends. And if the definition is “sadness because one has no friends or company”, it is not fully true. Because at parties we might be among our friends. But maybe we can’t talk to them. Maybe the music is too loud. Maybe they’re distracted by other things and you’re just a wallflower that doesn’t get any attention in that moment. Maybe they’re drinking or doing dumb stuff you can’t relate to. Maybe you’re questioning why they are even your friends in the first place. Maybe they aren’t doing anything wrong at all but you still feel like the odd one out.
Even that can be the moment we feel like we are without company, even if the company is standing 3 feet away.
Maybe whatever makes people feel connected to others, isn’t working 100% the way it works for other people in us schizoids.
Where does it come from?
Why do we enjoy solitude? Why don’t we feel lonely?
I can only make an educated guess that our childhood trauma and probable emotional neglect have taught us to rely on ourselves from a terribly young age.
If you look at Maslow’s Hierarchy of Needs, you see that Psychological needs, in the middle of his pyramid, are described as “Belongingness and love” – but I don’t think we are very likely to reach that stage. We are stuck at the bottom two layers of the pyramid. Maybe our physiological needs and safety needs are met, but that’s only the case for us privileged schizoids who have a place to live. In the homeless population in New York, they discovered there were way more schizoids than is the norm. To those people, even the bottom of the pyramid isn’t met.
But even the privileged schizoids like you and me, who are able to read this blogpost, probably will have trouble feeling like their psychological needs can be met or are being met. Or maybe you can “think” they are being met, as in “I have family and friends”, but you don’t feel it. As in: you don’t feel the love or intimacy that comes with those relationships. You cognitively know it’s there and you can acknowledge it, but feeling their love is harder, as is feeling your own love for them.
If you have feelings of love, they’re likely to be hidden so deeply within yourself you don’t feel it at all.
In a way, we are “the walking dead” – sure, we’re still walking around and we’re not completely falling apart, but what are we truly feeling anyway? Don’t ask us, we’re not sure if we’re not feeling anything at all or if we’re burying it deep inside. (And then usually it erupts in bursts of anger or incessant tears of sadness.)
As a result, I think we don’t experience loneliness a lot because we’re cut off from our own emotions most of the times anyway. And being alone is one of the only comforts we have in a cold and uncaring world. To us, it’s great. It’s safe. It’s secure. And we like feeling safe and secure.
Stopping traditions
I used to love going to a pagan festival in the Netherlands. It was a rather quiet festival, with nice food and people who were dressed up and not giving a fuck about anything, and there was nice (not too loud) music and it was a welcoming place to all. I travelled there once a year, for about ten years in a row, and had some friends at the festival who I only saw on Facebook during the other months, and I would listen to bands, browse the stalls, even sometimes dance and eat so much of the good food there.
I knew a lot of people there. Not intimately, but enough to know their names and recognize their faces and know which ones were fans of which bands and music. Enough to have a stop and chat when I saw them.
But the final time I went, I wasn’t in a great mindset in the first place, and I went there and I tried to look for some of the people I knew, but I saw none, just strangers. The festival had been growing exponentially and with the influx of visitors and the commercialization of the event also came the side effect that many old folks no longer went – and that it was harder to find those who did in the crowd. Even the bands had changed.
I couldn’t find a friend (and she was also not really into meeting me first thing in the morning, she was content bumping into me later in the afternoon), and I was sulking and feeling like an alien in a place that I had considered home for so many years. Suddenly I felt like the stranger and the outcast, and I was not in the mood to mingle with new folks. There were too many, it was too loud, the crowd was too much. (And yes, I’m aware it was probably a mild anxiety attack that was making that feeling worse.)
I did see some friends later on and spoke to them, but it all felt terribly hollow and I stopped going afterwards. I did feel very lonely that weekend, even among my friends and acquaintances of the event, and I just wanted to go home and never return.
That event was like Christmas to me, something I looked forward to all year, but I just felt like “Fuck it, I don’t care if it’s tradition, I don’t want to do this ever again, it’s not worth it.” I haven’t gone in years now. I wouldn’t go again now, I don’t think it’s gotten better.
At family gatherings I might also look at the people there like I’m the alien looking in, and feel like I have no one to talk to or connect to. I feel like I’m constantly engaging in conversations on other people’s terms, about their topics of interest, not about mine, and I’m listening to them, but they’re not listening to me. They might ask me questions, but only about things I don’t want to talk to them about. Everything feels cringe. It’s terribly lonely when you feel like you’re speaking a language no one understands or is interested in learning, and when you’re expected to respond to people on command, like a dog forced to do tricks no one is even giving him a reward for.
So naturally, I have also stopped attending family gatherings. No one there is like me, it’s draining, and I gain absolutely nothing from it, except the feeling of loneliness among your own kin. It’s not a charming feeling.
Then what’s left?
I can enjoy crowds at conventions, since these people usually skip small talk and would prefer talking about geeky stuff that I enjoy as well, so I hardly ever feel lonely there. Some of the folks there have interesting brains to pick and there are usually activities (watching Q&A panels or gaming) that you can do alone.
I do not feel lonely among my colleagues on the work floor. I like it there. I like my colleagues. I can even go for a drink with them sometimes. However, I would not enjoy going to a party with them, where there are strangers. Then suddenly I’d feel like the alien again and I’d just want to go home. (Mind you, at first I was just neutral about being there and it took years to develop into a like.) (But now with covid-19 I don’t mind if I don’t have to see them until 2021 when a vaccine is found.)
Put a schizoid in a house alone, and we enjoy our own company. There won’t be feelings of loneliness there, but put us in a crowd, and you’re more likely to cause sadness in our hearts because we feel out of place and out of touch.
And many schizoids don’t even want to belong to particular crowds of people. It’s not a direct wish to be included in the particular group we are beholding. Take any group you can think of, we might see them and think “hell no I don’t want to be a part of that” and simultaneously think “they do seem happy though, I wish I could be as content”. But faking it is draining, and not rewarding at all with the wrong crowd of people, so you won’t see us try to mingle in such cases. (And practically everyone is “the wrong crowd of people” – we aren’t generally very trusting of strangers.)
The idea of a group of like-minded people that you can trust and have fun with, who really see you as you are, is alluring though. But most of us have given up on dreaming such groups exist for us. Some schizoids might have hope that they will encounter such groups to belong to, but have to be content with just being allowed to “exist” as part of a group. I don’t think it will be easy to feel full elation or full grief along the other members in the group, and thus we might feel a need to fake it or to just blend in. In doing so, we are, perhaps only subconsciously, also reminding ourselves we were never truly part of the group in the first place, since we do not fully fit into the collective. And thus our souls will feel alienated even more.
True connection with other people is rare.
I’d like to believe it’s not impossible though. There are schizoids who have found love and have long-term partners. So I’d like to believe there is still a possibility for true connection out there. We can be fiercely loyal to those who we deem worthy, but we can also be easily hurt if that person decides to break our trust.
I think those schizoids that don’t struggle with loneliness are also the ones that have accepted that love and connection is probably not going to work out for them in the long run. Why hope for an impossible dream when it’s more comfortable to just enjoy your own company and try to be content with that?
I won’t make a declaration on whether it is healthy or not to think that way. That’s up to a psychologist to decide.
But in my opinion, being able to be alone is an undervalued skill in modern day society. Especially in these covid-19 times when you see people go nuts when they can’t be alone for a day. So don’t let anyone make you feel bad for being different in that way, and for enjoying solitude.
Maybe we have this skill because we have been broken before, but the skill of comfortable solitude in itself is an asset, not a curse. And even when we are ‘fixed’ by therapy, it is still a skill we can rely on for the rest of our lives.
And as a final note to today’s blog post, allow me to add a very cheesy song as a recommendation in the same theme. From the soundtrack of the Phantom of the Opera movie, Learn to be Lonely, or as someone in the comment section on youtube said: “Ah, the anthem of the emotionally neglected child.”
I started therapy on the 23d of July 2019. I was 35 years old at the time, and I had decided to go into therapy for the following reasons:
I felt permanently exhausted
I felt like somewhere during my adult years I had slipped into a depression I’d never gotten out of and I wanted to feel happier in life than I did at that time
executive dysfunction - I still need regular help from my mom to keep my household in order
I lacked any and all ambition to do anything with my life
I had begun to suffer from anxiety and sometimes tiny anger outbursts which were occuring more often than before, which was a sign to me something was wrong and only getting worse as I aged.
I had tried seeing a psychologist when I was 30. It was a man who I disliked so much that after 2 sessions, I ghosted him. I could go into more details, but let’s just say he was not a match for me.
It took me five years before I gathered enough energy and courage to try again. In a way, Tony Atwood helped. I’d stumbled across his videos on Aspergers in women and I’d begun to think that maybe it was Aspergers then. The above symptoms would not be misplaced in a women my age with Asperger - and it was until I got my diagnosis two weeks ago, on the 8th of May, that I was bracing myself for an Asperger diagnosis.
When it turned out to be Schizoid Personality Disorder, I was like: “I’m a what now?”
But kudos to Tony Atwood’s videos for at least encouraging me to seek help and to approach a possible diagnosis with optimism. Even if it’s not Aspergers, I needed that little push in the back.
Why did it take from July to May to get a diagnosis?
Something which may be atypical for someone with Aspergers or SPD, is that I am rather open when asked questions, and I can’t give short answers to complex questions.
The first sessions were about painting a picture of the people in my life - my parents, my sister, her husband, their kid, other important figures in my life like my grandparents, the sort of household I’d grown up in - were my parents constantly fighting (quite the opposite) or did I suffer abuse (no), stuff like that.
They also asked a lot about friends. Did I have a lot of friends as a kid, was I bullied, who were my friends now, had I kept my friends from when I was younger (definitely not).
What about my job and hobbies, what jobs had I taken, what education had I had. She wanted to know when I moved out of my parents place (when I was 25), if I’d had many romantic relationships (none longer than about 8 months).
It took months to get through all that personal information. In sessions of 1 hour (which are sooner sessions of 45 minutes than a full hour) it’s hard to paint the complete picture. Sometimes I went twice a month, sometimes I skipped a month due to the full agenda of my psychologist, but on average I went once a month.
Then after that, this was already in 2020 I think, we started an autism questionnaire, to determine whether I was on the autism spectrum scale (which seemed likely due to the problems I’d mentioned). The psychologist also invited my mother for one session, where she asked questions about my childhood.
“Did Jessie have a lot of friends?” “Yes, she always had friends over.” “Yes, mom, but that’s because you arranged the play dates with the other moms - I didn’t always have a lot to say about it.” “I guess that’s true - you did always enjoy playing on your own. One party, a mom told me that all the kids were playing in the garden and you’d gone inside to play alone with some of the toys - not bothering with the other kids.” My mom remembered that as being odd. I’m far from surprised by that.
After the interview with my mother, I also answered a questionaire about other personality disorders. This is where questions were asked to determine if I had, for example, borderline or schizofrenia or bipolar disorder etc. It was to check if any of the disorders on the DSM-5 applied to me.
And so after about 2-3 sessions of answering those questions, I finally got my diagnosis last session. It was during the last five minutes or so of the session, I was like “and, and, what is it? what have I got?”
I felt numb when she told me what it was - also because I did not understand. I had *never* heard of schizoid personality disorder. And in five minutes, she didn’t have the time to fully explain it to me either. And since I was a little numb from the news, I don’t think I retained the information she gave me as well as I otherwise would have.
She explained that while it’s called a disorder, she is not fond of the word ‘disorder’. She also told me it’s something hermits and loners often are, which made sense to me. She told me that schizoids don’t mind being alone and often prefer it, and once again that struck true.
I also asked why it wasn’t autism then, to which she briefly replied that in my childhood, I did not seem to have difficulty with learning social behaviors.
Next session, I will receive more information from her on the schizoid personality disorder, abbreviated as SPD, and possibly we’ll also check on differences with Aspergers, just cause I am terribly curious about that and will ask for it.
It’s still a week or two until my next session - and in the meanwhile, I’ve looked for more info online. I’ve read the wiki, then continued on other articles online and found a few Facebook groups to join. The more I read about it, the more I’m seeing myself in stories of others.
I’m no longer numb from the diagnosis - but it did take me a day where I was exhausted, cried a bit, lay in bed, before I was like “okay this ain’t bad at all!”
I plan to continue this blog to describe things I learn about myself, to report on my “treatment”, to report on schizoids in modern-day society and to shine a light on what it is to be a schizoid woman.
If you think: “Oh, could I be a schizoid?” - I honestly can’t tell you. Nor are there online internet tests that will give you a conclusive answer to that question. I do recommend seeing a psychologist for that - but it might be harder than ever to get on a waiting list. With the Corona crisis most psychologists have their hands full these days, due to all the mental problems the neurotypicals are going through as a result of the lockdowns.
If you are a schizoid who lives alone and are now allowed to work fulltime from home for the first time in your life, you might feel like I do: that this lockdown is the best thing that ever happened to you. My anxieties are practically gone, while the anxieties of neurotypicals skyrocket.
Hello, I hope you are all well. Thank you for sticking with me despite my lack of consistent posts. I’m trying to keep with the alphabet theme because it’s more interesting, I think. It also gives my posts a bit more structure, rather than me just rambling.
Anyway, today I want to talk about diagnosis. Specifically, a new diagnosis.
As you should know (if you’ve been following me for a while but don’t worry if not), I have Inflammatory Bowel Disease and Primary Sclerosing Cholangitis, as well as a few other less impressive-sounding conditions. The IBD and PSC I mention specifically because there are thought to be links between them, mainly that patients with Ulcerative Colitis (the form of IBD I have) are more likely to develop PSC than those without UC. This is known as an extraintestinal manifestation which means that other conditions may develop because I have IBD.
Other extraintestinal manifestations include condition such as arthritis, skin conditions, inflammation of the eye, anaemia, problems with the kidneys, and osteoporosis. That last one is what I want to focus on today.
Just to clarify, I do not have osteoporosis. I do, however, have thinning in the base of my spine which they found recently in a bone density scan. This, I believe this is called osteopenia, but I’m not 100% sure as my GP didn’t put a name to it. Anyway, the thinning isn’t too serious, by the sounds of things, but they do want to start a form of treatment to stop it from developing into osteoporosis. My GP is consulting my GI as she doesn’t want to start anything that may aggravate my IBD. In the meantime, I am doing daily exercises that are designed for those with sciatica. This may or may not help but seeing as how I do get mild sciatic symptoms from time to time, I don’t think this will do any harm.
Speaking of exercises, I am still doing my knee exercises, as it doesn get stiff if I’ve not moved around for a while, and I’ve also added abdominal core exercises to my routine to strengthen my core. My goal is to do them all at least once daily so that I am as strong as I can be to return to work in two weeks. I am also trying to stick to a routine of getting up and going to bed at the same time each day (even the weekends) to regulate my sleep and get my fatigue under control.
Thank you for reading and I hope you are keeping safe and well. Until next time!
I guess it’s funny to me that whenever I started this tumblr page I must have been at least 18 and apparently thought naming it after a line from one of my favourite movies would be cool or edgy maybe . A line from a movie that now seems to me more serious than cool and more close to home than the edgy feel I’d been going for. What’s your diag-nonsense then?
I had thought about not writing this at all and after all what good does it do to dwell on your issues . Maybe this has been my problem all along and infact according to my counsellor perhaps is the same for many people in the West of Scotland . This inability to accept that dwelling on your own thoughts and feeling is not weakness . Beating yourself up for being unable to cope does not make you shit at life .Sharing your most mental thoughts with another can actually be refreshing even if its just to know you arent alone . Its funny to think how readily we read instructions for everything else but when it comes to our own brains - brains that are more complex than your tv or computer we are so ready to just handle them on our own with no guidance and shrug off all the issues.
I recently found myself at a music festival , a music festival that I had been excited for , a music festival that would not be something out of the ordinary for me “normal me ” to attend . Yet we got there and I felt sick, sick to my stomach and I was scared so so scared . I didnt understand why and so like most people when we don’t understand or can’t explain something rationally I shrugged it off and pushed it to one side . Making excuses like I’ve been in the sun too long or I’ve drank too much . Later that evening the feeling grew and I made my partner take me to the medical tent all the while feeling embarrassed and like I was ruining the weekend for other people . It’s there that after many checks I was told that my heart rate was possibly a little high but otherwise I was fine . How do you sit there and tell a medical professional , no I’m not fine and I can’t tell you how far from fine I feel and I think I’m going to die. Well the answer is you don’t, at least not in my case anyway . No I hopped off the bed and thanked him for his time and embarrassingly went back to my partner having to tell him it was nothing and return to our friends . Everyday for the rest of that festival I didn’t drink because I needed to feel in control of whatever this was my body was doing and so I got up and put on a brave face and did my best to go have fun . Every night though after the last band I’d feel so so tired more tired than I’ve ever felt before and I couldn’t stay awake and party with my friends. I Didn’t realise how exhausting it is to pretend you are okay all the time . This was just the beginning for me .
Right at the end of this festival I finally decided to try tell my partner what was going on as ridiculous as the sensible part of my brain thought that was going to sound . I did my best to explain the need to be sober to be in control just incase I got unwell or the overwhelming sense of dread that made no sense to me . I’ve been in large crowds before and I love music and I’m not unwell so what could this be . My partner was great I can’t fault him he comforted me and promised me as soon as we got home I could see a doctor and we would figure this all out .
So now I’m a few months on and my final diagnosis seems to be generalised anxiety disorder specifically health anxiety based . Now before I go into my healing process I want to say how hard it is for me to write that diagnosis . I am not someone that exactly believes in “anxiety” or maybe I should say I didn’t believe . My own father has suffered from depression for many years and I viewed it as an excuse for his bad behaviours and his tendency to mess life up for himself . I was that person moaning about all those people sharing anxiety posts on Facebook and complaining about how badly it messes with their lives . I thought anxiety was just something everyone had at some point and surely if you wanted to overcome it well then you could. I’d complain often about people not helping themselves but continuing to post these cries for attention . How wrong I have been . I think possibly I knew at that festival what it was I was experiencing but it felt like there is a stigma attached to saying I’m having an anxiety attack or I think I have anxiety . One that made me feel embarrassed that this could be happening to me . I don’t worry about all these things that I’m worrying about , normal me doesn’t burst into tears everytime I get a twinge in my head, old me didn’t wear a fitbit to track my heart rate and call the doctor everytime I noticed an anomaly. I think it took a long time for me to process that all those versions are the same me . Where am I now ? After a few months of some highs and extreme lows and plenty of tears I found the strength to admit I needed more help to conquer this. I signed up to counselling sessions through occupational health and began seeing a wonderful woman Maragaret . As you can imagine I went to my session a sceptic or at least doubting that talking about it more was going to solve it but alas you cant moan about others not helping themselves if you aren’t willing to do it yourself . My first session I have to admit I mostly cried , I couldn’t tell whether they were sad or happy tears but there was relief there . Just relief to speak about it , relief to finally admit this is real and to finally stop playing it down for the sake of people around me . We established straight away that I am not alone and what I was going through is not unusual . We also talked about loss and I couldn’t understand why loss related to my situation as I had automatically assumed that loss refereed only to losing a person . Maragaret was quick to tell me I had lost a person , id lost me or at least the me I was familiar with the me that ended up with a kidney infection because I couldn’t be bothered going to the doctors when I was in pain and not this new me that poked and prodded herself so much it was no wonder I was worried about that weird red mark on my wrist or that tender feeling near my knee . In the past few months I had been to the hospital convinced I was having a heart attack, the doctors because I was so sure I had a blood clot in my leg and then received a referral for the headache clinic because I was so sure I had braintumours . Now writing this I know it’s total nonsense what person in their right mind does those things. Well apparently I did … Some days it got so bad I thought I might just go to A&E and stand and shout till they gave me all the scans and tests that I thought were going to finally put my mind at ease but of course it doesn’t work like that. So loss I had infact lost myself.
I was given a task to write down things the little evil person on my shoulder might say to me and I did and when I read it back they were awful . It was then ten times worse when Margaret read them out , like really how can you help yourself when those are the ways you put yourself down all the time . So compassion, compassion was a lesson to learn for me . A way to make myself take time out in an anxiety fueled situation and compassionately talk myself down and give rational , sensible advice that didn’t involve just yelling things at myself for not working how I think I should . For not being good enough to go out and enjoy something that should be happy without ruining it all being a panicked mess. So my method as awfully simple as it seems is when the closing black walls start moving their way in I breath and I count and I remind myself that this, this is nothing and that I am 26 and I have already made it through so many things . I am strong and healthy and I have so much to see and I am going to live for this moment right here because as wise Margaret told me “if you have one foot in the past and one in the future you are effectively pissing in the here and now ” .
Be understanding also , I watched a mindfullness seminar recently I believe it might have been on tedtalks . A suggested method from the speaker was to give your brain a name , you know like an old friend . So when your brain starts running off on it’s crazy train pulling out every bad thought and possibility of the day you can answer it . Sensible you can tell Brenda , you know what Brenda I’ve heard what you had to say but I don’t think I’m gonna take that road today . I know it sounds ridiculous but it made me laugh and I liked it and those are small things to live for .
I know this has been a long post but I think I wanted to write about how something that I didn’t believe was real happened to me . I wanted the chance to take back all those negative non believing vibes I’d put out and be upfront and honest about my experience. Life isn’t Instagram perfect and sometimes I think we forget that. I am not healed and I am far from finished my journey but I am happy and well and alive and that right now is more than I’ve felt in months. I wanted to remind anyone going through anything at all that’s it’s alright and it does get better. I wanted to remind myself so I can read back how horrible it was but not to dwell on the bad just to remind myself of how good it feels to have anxiety free days and of how good it feels to know it’s not something to be embarrassed about and I did something about it and I’ll continue doing things about it so that I can live always in the here and now. So don’t forget compassion and understanding and remember to laugh at yourself in between. It’s alright to be a bit crazy
I’ve missed all of you. And posting on here regularly. Life has been hectic and full of challenges. J has just finished his first round of radiation and chemotherapy. Now we just need to wait. After a four week break we will do an MRI and see if the tumor is gone fully, or if it is back. A few weeks ago we had a horrible scare. J had headaches again and we went to the hospital. They saw two images but could not definitely say what they were. Swelling from the radiation. Swelling from surgery. Swelling from medication. Or worst yet, two tumor growths. We won’t find out till weeks from now when they check again.
In the midst of all of this we have suffered grave financial difficulties. I have been out of work and trying to find SOMETHING to pay the bills. Countless interviews later and still nothing. Meanwhile bills pile on. I know I haven’t been as around as y’all would like, but I really need help right now. Please, if you’re able to, please donate something to help us survive this. And please forward and share J’s PayPal to others.
A cover I did last year, the image was based on a propaganda poster from the book. Available now on Amazon
“OLIVIA THOMPSON is a seventeen-year-old living a comfortable middle-class life in the Newland Settlers Confederation. After developing unusual symptoms, she receives a horrifying diagnosis. She is V1 positive, slowly turning into a vampire. The ‘Three-day Law’ gives her two options: Present herself within seventy-two hours at the border of the Vampire Union or submit to summary execution. If she fails to do either, the government will hunt her down. With a once in a decade blizzard bearing down on her, can Olivia evade her pursuers and make it to the border alive?”
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