My story: post #1

Hello everybody, I am here to represent an intersection of a few Minorities. I am a Non-White, Transgender, Queer, Disabled Young Adult. I have had Chronic Illness, Fibromyalgia, for most of my life and thought that my frequent Symptoms of Pain, Fatigue, and Stomach Issues were normal.

I have always been independent, living alone since I was Sixteen Years Old. I was studying in four different countries. Even with my Chronic Illness. I was able to pursue my many Academic and many Extracurricular interests, as well as socialize frequently.

When I arrived to Los Angeles to finally get to rigorous studies of math and physics, a few problems arose. I experienced an Extreme Dislike towards my Body and Social Discomfort around being Perceived as Feminine. I began to Medically Transition and proudly claimed my title as a Trans Man. The other problem was an extreme increase in my Symptoms. So much so, I was losing the ability to take care of myself and perform Necessary Daily Tasks. It was my first Fibromyalgia flare, and it was extreme.

After doing extensive research, I came to the shocking conclusion that my body was "not normal". Realizing how different my life was from my peers' was very Depressing. I saw a Rheumatologist who barely helped and I began to understand how the Medical System "treats" Chronic Illnesses. Basically, I was ignored for months at a time.

I found some self-help resources for Fibromyalgia and Chronic Fatigue Syndrome and between that and Occupational Therapy I was able to make some life adaptions that decrease my Pain and saved me energy. Even though I felt that I had my Fibro Flare under control, my joints continued to pop and shift painfully. My Mobility became Severely Impaired. My partner moved in with me, to help keep my Mental and Physical Health in check.

When I went to the university hospital's highly ranked Pain Clinic, they made it clear that the previous treatments I received were not worth it. They also explained that they believe I have a Progressive Disease called Ehlers Danlos Syndrome (hypermobile type). The connective tissue necessary for joints degenerates and other parts of the body along with it. All of this clicked in my head as my outlook turns into Less Mobility and more Pain. I'll never forget this moment. I asked "So... I have a Progressive Disease and not a Chronic Illness?" My doctor replied "No, you have Both"

They sent me back to my old Rheumatologist, even though I was very vocal about my dislike and distrust for him. I went back to that doctor and he would not even talk to me about EDS. Now, more than four months later, that was the last medical appointment I was able to have.

I have always had a passion for math and physics. I was eager to become a hard-working STEM student. However, my body had other plans. I had to drop two of three classes I last enrolled in. This came with a great cost. I had received my first research grant but lost eligibility due to my light course load. As the semester came to an end and I realized my health condition would not allow me to live freely, I decided to go on Medical Leave..

The only way I get by day-to-day is my partner cooking and cleaning. Sometimes they have to help me with the basics: Stand, Walk, Sit Up, Eat and Bathe. Carrisa is twenty one and I am twenty (I was nineteen when this first started). We have created a good system using apps and charts to communicate how I feel and what I need. While I am incredibly grateful for them every day, I also feel like we have we have both been robbed of something special. Carrisa is a Social and Energetic Extrovert. They have spent weeks at a time at home caring for me. And I would love to be able to help more around the house and spoil my amazing partner with a romantic home-cooked dinner and dancing.

It has been such a difficult and painful transition (mentally and physically) to go from Able-Bodied to Disabled, to realize that I am incapable alone and need external help to survive. It has taken a lot of trail and error, and a lot of research, to make our home accessible and easy to navigate. Every disabled person has to go through this process, and it’s not easy, but it is necessary.

Another loss came in the form of losing a Professional Opportunity. I kept my part-time research position for income. I have recently had to step down from a project, I was very attached to due to my Health. I feel worthless because I am Financially Dependent on others, and for the first time in years have no source of income. On the bright side, I am learning to define my self-worth in intrinsic values instead of what I have to offer and the work I produce.

I have hidden away, not wanting anybody to see me hunched over in my wheelchair. Only a select few close friends have seen me at home using my Mobility Aids. Logically, I don't think I have any reason to feel such shame, but I don't want people to view me as different- as incapable. A year ago, I could walk ten miles in a day easily; now I need help to get around my seven hundred square meter studio. It is a huge difference.

I have a lot of time on my hands to Feel Sorry for myself, to worry about my Future and to be Angry at life for dealing me such a bad hand. I had such big plans. So many passions I can no longer pursue. But I also took joy in learning about the Diversity and Resilience of the Disabled Community. With this knowledge came a realization of just how much ableism I have internalized. My partner points out when I say negative things about myself in the context of my disability. They remind me that there is more to life, and to a person, than what they can physically offer.

Since last year, I have used a cane. I got another one and sometimes I have had to use both at the same time for big outings, I need a Wheelchair, which we rent from where we travel. Reality seemed to crush me when I had to buy my own Wheelchair. Mixed feelings, I was happy to be able to get around easier but bitter that I needed a Wheelchair. It is also very scary, realizing that’s its not just my disability I have to fight; society also makes it hard for me to exist. The inaccessible landscape of every single city also greatly limits people who rely on wheelchairs to get around. It’s only an afterthought, as we are the invisible population.

One thing that has helped me greatly is creating my Hand-Made Wheelchair Decorations. Using melted Perler Beads to make larger decorations. I use beaded metal jewellery wire to secure it. Each one has a meaning that I am proud to know. Making these decorations, carefully making patterns and words for the attachments. I create designs to hang from the string of beads. This has helped me feel in control. I was happy to see my Wheelchair because it looked like it was mine now. I would like to give this Unique touch to others in the Disabled Community. I want to sell custom-made Wheelchair Decorations. I am Young, Hardly Working, unable to get Legal Disability Benefits, and desperately trying to find California Insurance I can use. While waiting to hear about the status of my Medi Cal Free Insurance. I am going crazy not being able to see a real doctor. This is my Escape and hopefully a new Source of Income.

As my partner does so much for me already. I try to be conscious of how much I lean on them emotionally. They cannot relate to me being Disabled, so it's hard for both of us when I talk to them about Chronic Illness or Disabilities. I turned to the Online Community to Teach Me, Welcome Me, Guide Me, Comfort Me and see me for who I Really Am. As my sense of self has been stripped away by multiple severe Mental Illnesses, Health Problems and the discovery of my Physical Disability. I find it piece by piece in a myriad of things-this is one of them. I hope to see a reflection of me in others, since I have lost my sense of self and my personality has changed. I’m much more emotional, I need people, and I have developed a fear of life.

I have found people like me- fellow transgender people with serious health conditions. Seeing, for the first time, a transgender man with h-EDS, made me realize how precious representation is. Currently, I don’t feel like I represent queer and disabled people- it’s too difficult to be visible. Wearing a binder (which makes my chest flat) hurts too much, and I also cannot work out to get a stereotypical man’s build. Representation for all kinds of men, with all types of bodies, is incredibly important. People need to know it’s okay to have a body that’s not the “normal” man’s build.

Online, people can express their frustrations about the Medical System. Their Doctors, even their Friends and Family causing problems. There are too many Horror Stories about Failed Treatments, Bad Doctors, and being denied disability. However, we know it doesn't matter because we are a Community and we Protect Our Own. I've even become a part of a Mentoring Program from a Disability Support Group on Facebook. Something I've wanted for a while. Being a New, Part Time Wheelchair User. I lack a lot of basic skills. I'm so excited to get to know my mentor better.

Just like when I first came out as trans and had no idea how to proceed, there is no handbook on how to live with a disability. You must trust yourself, and try your best to find what works for you. Many self care ideas are directed towards able-bodied people. I can perform maybe 30% of the tasks presented in “easy self care” lists. Additionally, a lot of activities recommended to battle depression and anxiety (such as exercise, hobby, journaling, traveling, socializing) are either very difficult or impossible for me. What do I do? I practice gratitude every day- appreciating my partner, our cats, and the lovely apartment we have. I take every small win, and try to ignore the nagging cynic in the back of my mind.

Words like "never" (as in I will never get better) and "always" (as in I will always be in pain) scare me. But there's another side. I will never succumb to my Progressive Disease and my Future Spouse will always be here to support me. I hope all of your "never's" and "always" turn out well. Finding the flip side, the hidden treasure that nobody wants to look for. Is what I've been doing. And I discovered Amazing People, a Stronger Personality, and the Kindness of many Strangers.

All the best

Emil

*NOTICE*

If you would like to order a Hand Made, Custom Wheelchair, Walker, or IV Pole Decoration that is Made With love. Please visit My Instagram Page @health_and_unwellness or find me on Etsy: https://www.etsy.com/shop/Charminghealth?ref=seller-platform-mcnav