Seraiah: Trans and Chronic Illness An Ehlers Danlos CFS Story
I am putting a trigger warning here. We go into PTSD, assault, and assault by medical professionals. All advice is to be understood as personal experience.
Here are some resources I found please contact me with others especially Transgender Health Care Internationally
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What is your disorder? *
At what age did your disorder become a daily issue? *
Who were you before your illness became debilitating? *
I honestly don’t know, it started so young
What would you do if you were not dealing with your invisible illness? *
That’s a hard one.. probably helping people though. I haven’t been able to work for over a year and college isn’t really a possibility for me, It’s weird to even think about how different things could be
What would you like people to know about your daily life? *
It’s a lot harder than I make it out to be. It’s easy to look at what I put out there and think things are alright but it’s a struggle just to get out of bed every morning. It’s a struggle every day to keep myself from slipping into dark spots of feeling worthless and like a burden for my conditions. It’s crushing every time I have to realize there’s another thing I can’t do like any other “normal” 21 year old should be able
What would make living and moving in the world easier for you? *
Less judgment. I still feel too scared to use mobility aides without being judged for being young and appearing healthy. I don’t ask for accommodations because I’m worried I’ll just be laughed at. It would make it a lot easier if doctors understood that young people have severe pain and not everyone with issues that can’t be seen are just “drug seekers” or other derogatory attacks on people who just want to be heard and believed
Do you have any life hacks? *
Oh man. I’m too brain foggy for this one right now, i just found out you can make homemade gel ice packs by mixing 1 cup rubbing alcohol and 2 cups water and freezing in a ziplock, haven’t used it yet but that’ll save my ass with this fucked up sprained foot I have going right now
What kind of support do you get from family or friends? *
Not much. Family denied my pain my whole life and led to more damage and no care for what could’ve been prevented.. don’t have a ton of friends at the moment haha, isolation with chronic pain and especially mental health can get intense. But I do have an amazing supportive fiancée who deals with a lot of similar issues, I wouldn’t make it without her love and understanding, her reassurance that I’m not less-than or a burden for my problems, and just not being alone in this anymore
Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *
Many times.. I have some quite traumatic experiences with doctors not believing me, and it’s once a whole extra level when they find out I’m trans. the worst to me is the dismissal that it’s all due to my mental health and being abused as a kid.. first of all, wtf? And second of all... even if that was true, does that make my pain any less real? Does that tighten my joints and make me stop dislocating? No? then treat me like any patient with visible illness and DO SOMETHING
How has your invisible illness affected your relationships? *
It’s been a struggle... it’s hard to keep friends when you flake all the time due to flares or injuries, or just having no energy for anything... I so thankful my partner understands and believes me but even then I find myself feeling like a burden, pushing myself to go past my limits because I feel useless if I don’t, even when people are telling me otherwise
Is there anything you are afraid to tell people in your life? *
Too much to list.. I keep a lot to myself
Does the fact that your disease is invisible change how healthcare professionals treat you? *
Absolutely. I’m still not diagnosed because nobody will take me seriously, a mix of the invisibility, my age, and being visibly trans
What is your best coping mechanism? *
Ha, not a healthy one by any means, but my usual coping is just dissociating
What are you the most concerned about and the most hopeful for in the future? *
I’m scared for the mobility I’m going to continue to lose and the pain that’ll keep worsening.. I’m hopeful that there will be more figured out but I don’t hold out much hope that I’ll ever be cured or better to really any degree, this is just my body.
What is your favorite swear word?
Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.
Mostly just want to share my experience and explain my views on language usage/ways to be more accepting toward trans people in general! It means a lot to me to be heard on this issue
What is the hardest and/or best lesson your condition has taught you?
That nothing is guaranteed. You never know when a flare will hit, or an injury will happen, or any other setback. Do everything you can while you can and don’t be afraid to grieve for what you miss out on
What is the best purchase under $100 that helped your life
Microwave heat pads, and one of those s curve plastic things with the nubs to massage and press out spasms.. my fiancée uses that one more than I have but she loooves it!