hopelesspyromaniacasked:

Hey, I have a problem. I’m transgender and I used to bind my chest in some less-than-healthy ways. This caused severe chest pain and shortness of breath, that I still experience now even though I haven’t bound in years. I’ve seen a doctor about it, and went to the ER over it a year or two later, and I have another appointment scheduled in a couple months. So far, nobody has given me a way to treat it, or even a solid diagnosis. I’ve been told it looks similar to costochondritis but that’s it, nothing more specific. 

My questions are:

• How do I find a way to possibly get an actual diagnosis?
• If it’s actually not something we have a name for, how do I treat it?
• How do I convince myself it’s okay to call myself disabled even though I don’t have a diagnosis, not even a self-dx

Thank you!

Oh, that sounds very sucky, and doctors are really terrible about more niche chronic conditions. I’m so sorry you’re dealing with this!

I’m afraid I don’t have specific advice about this issue, but I’m hoping our readers do. Does anyone have experiences to share?

Some more general advice from my experience, under the cut:

• How do I find a way to possibly get an actual diagnosis?
  
  
• If you haven’t looked for doctors who specifically work with trans clients, that would be a good start.
  
  
• If you haven’t already done so, join some trans groups online and ask around. The best way to find your diagnosis when the doctors are sitting on their hands is to see what other patients have been diagnosed with.
  
  
• Check out our Dealing With Doctors tag for ideas and info on navigating this shitty system.
  
  
• If it’s actually not something we have a name for, how do I treat it?
  
  
• That’s a tricky one. Although you can’t get to what’s perhaps the core of the issue, you can still use band-aids. That might be things like painkillers, heat/ice… not sure what to do about the shortness of breath, but there may be general remedies out there. I think there’s some empowerment to be had when you make a point of listening to your body and learning what you can do for yourself.
  
  
• How do I convince myself it’s okay to call myself disabled even though I don’t have a diagnosis, not even a self-dx
  
  
• Get back to basics! What does the word disabled mean? It means something has caused you to be unable to do something. From a functional and linguistic perspective, it sounds like your condition has disabled you. So yes, of course you can use capital-D disabled!
  
  
• People go their whole lives with mystery, undiagnosed illnesses. They’re still disabled!
  
  
• Seriously, try not to let weird internet gatekeeping overshadow these really obvious truths. I know it’s really hard, and I’m definitely not shaming you for it.
  
  
• When in doubt, please refer to this goofy guide we made.
  

@its-my-money-and-i-need-it-nowasked:

Hi there. I’m not sure if you’d be the person to talk to, but it seems at the very least you would know the people who I’d be able to talk to. I have a medical condition and it affects my ability to control and use the bathroom. Do you know if there is some sort of community out there thatd I be able to join? Thanks for your time and love your blog! ❤️

Hey! Great question. Not aware of any specifically, but I’ll bet readers can chime in with links :)

By the way, we do have an #incontinence tag with a few resources, if you haven’t run across it already!

hello there! I’m looking for a folding cane, but am also pretty short, so any height adjustable one is still a bit too tall for me. I was wondering if there’s any reason why it wouldn’t be good to just buy a height adjustable one and get a bit of the end cut off (not the cap), but haven’t read anything online about it. Thanks so much for your help :)

Sounds reasonable if you pop the cap onto the newly-made end, but we’re putting this out into the world in case folks with more experience with canes have thoughts on it.

@halfbakedpolymathasked:

In search of: trans/nonbinary folks with LAM, advice/communities for lung disease

From a friend of the blog:

“My friend is dealing with being trans while also dealing with being diagnosed with LAM which is something that almost only affects AFAB folks. They’re struggling with one part the mortality of having a progressive lung disease while also not being able to find people to talk about having it with because it’s super rare and also the only people they can find are women.

"I’m looking to see if there’s anything out there of other trans/nb folks for it? Also looking for advice to give them on dealing with having a lung disease and community.”

If anyone has leads or links, definitely comment or drop us a line!