Where are you from? Tell me a bit about yourself. What is your name, age, and disease/invisible illness/mental health? My name is Ash. I’m from New York and I’m 16 years old. I am female to male transgender. I’m currently diagnosed with POTS, Ehler’s Danlos hypermobility type, Depression, Anxiety and I’ve had a spinal operation for tethered cord syndrome. I am also recovering from an eating disorder which exacerbated my illnesses, due to dysmorphia from the illness, and from having a gender identity that isn’t reflected in my birth sex. I hope to be a creative writer who adds representation to the media.
When did life change for you? I used to be really active in sports, but no doctor could figure out why I kept getting so injured, as this happened a lot with me and I was deemed “accident prone”. When I was ten I had my spinal operation and thought the worst was over, until I began displaying other symptoms age eleven and was diagnosed with POTS and EDS while staying in the hospital over my twelfth birthday.
What was life-like before diagnosis? Well I’m both happy and sad for my diagnoses, happy because I don’t have to worry what’s wrong anymore or have a bunch of unanswered questions. But also sad because my illnesses are not curable and I’ll never be able to live my life without the pain or symptoms that come with it.
How has your diagnosis changed your life? It’s definitely had an impact on my mental health. I do not like being thought of as fragile or weak, but once the diagnosis was confirmed, that’s how I was treated and it really got to me, in sixteen and I’ve only begun to start healing emotionally from that. But I’ll take it any day over people telling me “you’re faking it” when I couldn’t produce a diagnosis, test after test. I’m grateful to have gotten out of my wheelchair and to find a treatment that works but everyday is different and hard.
Please describe the best you can a day in the life of you? I just started back at school in February, and when I wake up for school I must take my blood pressure meds a half hour before I stand up. I do this so I’ll be able to walk and move without dizziness. Everyday is different pain wise so all I can do is hope it’s not horrible and continue. I use an elevator key in my school because even though I’m out of my wheelchair, I struggle with mobility. I avoid hot weather because of blood pressure drops, and also try to avoid activities that could cause any sort of dislocation. That can be hard as I’ve dislocated my jaw just talking, or my shoulder by picking up a plate of food. Often I can’t hang out with friends on the weekend or after school because the days taken too much energy, physically and emotionally. I try to keep my fluid/salt intake up and take my 30+ pills on time as well as see my team of doctors regularly, but not let it take up my life.
What was/is the most challenging thing you have faced because of your diagnosis? Myself, I hate doubting my ability to do anything and relying on so much to be able to function. It can definitely make you want to give up.
Do you find that you can keep up with others? I try my best, but sometimes I need to call off plans. I don’t like to introduce my illnesses right away unless I need to, because I want to be seen as capable. However, sometimes backfires if I have a sudden flare up and the person didn’t know I had an illness because “I seemed so healthy yesterday”.
What would you tell others living with your diagnosis? Please don’t try to do it alone. This is going to be the hardest thing you’ll ever do, but you wouldn’t get this journey if you couldn’t handle it, if all you can do right now is move your little toe, that is enough and I’m proud of you. Please don’t give up, because then it will win.
What would you like to tell others that don’t live with a similar diagnosis? Please don’t question my needs, I know my body best. I try my hardest everyday, and sometimes it’s still the bare minimum. Please just listen when I ask for help, and listen when I need to be left alone.
What have you learnt on your journey? Sometimes it’s the hardest thing I’ve ever done, but it makes me who I am and it makes me as strong as I am.
Is there anything you would like to add about your journey? I’m kinda scared about my future, especially as a chronically ill trans person. I know I’ll have trouble affording my medical care, but I’ll also have a really hard time finding my transition.
Thank you for sharing your story with me and the rest of the world. I agree with you that others shouldn’t question your needs, you do truly know your own body best. Self care is vital when dealing with life’s challenges. You are brave, thank you for fearlessly sharing your story. Best wishes on becoming a creative writer.
If you would like to learn about some of the conditions here follow the links below.
What is EDS (Ehlers-Danlos Syndrome) https://ehlers-danlos.com/what-is-eds/
What is POTS (postural orthostatic tachycardia syndrome) https://rarediseases.info.nih.gov/diseases/9597/postural-orthostatic-tachycardia-syndrome
Depression and Anxiety explained https://www.adaa.org/understanding-anxiety/depression
Explaining Tethered Cord https://rarediseases.org/rare-diseases/tethered-cord-syndrome/