‘Brushing my teeth felt like climbing a hill.’: Adoptee shares traumatic diagnosis journey of rare autoimmune disorder

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Experiencing Illness Early On

“I was born in Cambodia in the year 1999, in an area where many faced extreme poverty and lack of medical and financial aid.

My birth parents gave me up for adoption when I was six months, and I was adopted when I was 1. I was adopted by a Germanic-American family and brought to the United States in 2000. I remember my mother always told me I was an active toddler, and I would run around like nobody’s business. I would run so much I’d tire myself out, and then take long, long naps on my uncle’s or my grandfather’s shoulder. I never remembered those years, but I did remember the beginning of elementary school. My mom enrolled me in my local school, and she wanted me to join the girl’s soccer team.

Myasthenia Gravis survivor as a baby holding up American flag
Courtesy of Miia Shapiro
Myasthenia Gravis survivor as a baby celebrating first birthday with cake
Courtesy of Miia Shapiro
Myasthenia Gravis survivor with white adopted family members
Courtesy of Miia Shapiro

I joined in the fall, and I remember being super excited to play. But on the first day of tryouts, I kept feeling like I was running behind all the others. Somehow I couldn’t keep up; my stamina was much lower and my endurance was very poor.

My mom took me for my annual exam and asked all the standard questions, but never paid any mind to any of this, and frankly— neither did the doctors. I kept playing, and I kept pushing myself. I thought maybe I just needed to work out or move more. Maybe I just needed to do more. ‘Why couldn’t I run without feeling so tired or weak? Why did every single movement make me feel like my body just wanted to shut down?’ I questioned it countless times but kept it inside.

It began to affect my mobility out of sports when I would walk upstairs to go to class or I would walk down long corridors. Or participate in P.E. Even simple things such as bending down or standing up fast were becoming difficult. I quit sports when I was ten, and I stopped being able to run. By that time, I had lost a lot of stamina and endurance but was also dealing with a lot of mental exhaustion from being bullied at school.

Depression, Misdiagnoses, And Death

During my pre-teen years, I spent time at a weight-loss camp and boarding school and broke my ankle, which left me having to use a wheelchair for about a year or so. At the age of 14, I decided to start using a wheelchair to help me with my mobility issues. My mom who had used a wheelchair my whole life due to MS was very concerned about it and was completely against it, due to her internalized ableism.

When I was 15, I was misdiagnosed with conversion disorder and sent to a treatment facility. I experienced several different traumas and different types of abuse that I am not at liberty to discuss at this moment, but I now have complex medical PTSD.

My mom died when I was 17, and I was put into foster care. I found out my wheelchairs had been sold because they weren’t considered a medical necessity. I struggled for the next two years with my mobility. During that time I met a man, had a relationship, moved out on my own, dropped out of high school, and had a short-lived engagement with the said man… that didn’t end very well. I was extremely depressed and my illness was getting worse. I stopped caring about myself. I stopped caring about waking up in the morning or going to sleep at night. I wanted everything to end. I felt so alone, like my life wasn’t meant to be lived.

I felt like not only was I not prepared to be on my own, but how isolating living with an illness was. I realized I could not take care of myself. The simple act of brushing my teeth or taking a shower seemed to be like climbing a tall hill.

Turning My Life Around

It wasn’t until I met my now husband, Adam, that my life started to turn around. We met in 2018 on a Facebook disabled dating group, when I was 19 and he was 36. He is also disabled, due to a spinal cord injury in 1996. We clicked instantly, and on the first night of us talking on the phone we spent five hours together. It was perfect. Adam, who lived in Sacramento, CA, moved across the country to live with me in Virginia. And we’ve been together ever since.

When we first lived together, we shared my tiny studio apartment (that could barely fit me in it). Little by little, I would let Adam into my life. I’d let him take me to doctor’s appointments. I’d let him help me find doctors while also helping him look for doctors and medical care for himself, since he had just moved. In a way, we helped each other. It was very healing for me and very healing for him.

Myasthenia Gravis survivor getting married to husband
Courtesy of Miia Shapiro

When one doctor didn’t work out, we’d mope for a minute, then we’d look around and find others. We kept looking, but never gave up. It was a lot on our shoulders for sure. Especially because I was getting weaker, rapidly without any answer.

Eventually, I had to work up my nerve and work through some of my trauma, and I asked my family if they would buy me a power wheelchair – I was afraid of what they would say, but I knew I needed it. I held my ground and I got what I needed. My family listened to my needs and have been by my side ever since. After being in that particular wheelchair, I needed a new wheelchair because my needs were changing. I received my wheelchair (that I’m sitting in currently as I type this) last year. Adam helped me advocate for it, and I got it paid through insurance in full!

Fighting For Myself

I felt empowered when I advocated for myself! I did. For the first time, I felt so heard and felt like I could do anything. And so I pushed myself further. I decided to be my advocate for getting a diagnosis.

The first diagnosis clearly on my radar was Myalgic Encephalomyelitis. Sometimes referred to as Chronic Fatigue Syndrome, but is not generally the same thing. I don’t know what exactly pushed my mind toward that but my body reacted to it like it was very likely the symptoms matched. I experienced many of the symptoms and it seemed likely because there was no real test for it.

Every MRI, CAT, EMG, etc, I had ever taken had been inconclusive or considered ‘unremarkable.’ But the only thing that was there was my long list of signs and symptoms. Plus, a large indicator I indeed had a neurological impairment of sorts – the pinnacle (in my opinion), a neurogenic bladder disorder. A neurogenic bladder disorder is a disorder affecting the functionality of the ureters in the bladder, caused by either traumatic nerve injury or diseases that affect the central nervous system.

When ME/CFS didn’t seem to make sense to my doctors anymore and seemed to make far less sense to my husband and myself, I felt lost again. I didn’t know where to go, or what to do. I thought I had sussed it out. I thought I could rest, relax, and just stop fighting to finally know what was going on with me. For doctors to finally see me, and hear me and feel me. But God, even with ME, they overlooked me every time I spoke. The idea was that somehow I was just overweight, or just tired, and that’s why I used a wheelchair.

Myasthenia Gravis survivor in hospital bed and gown
Courtesy of Miia Shapiro
close up of Myasthenia Gravis survivors hospital tubes and scars
Courtesy of Miia Shapiro

Diagnosed With Myasthenia Gravis

I don’t exactly know what happened for all this to shift, but I leave that up to my spirituality. I am so grateful for this next part…

I was at a visit with my ophthalmologist who I had been seeing for many years due to Hydrocephalus related to Spina Bifida Occulta. I filled her in about my ptosis (eyelid drooping) that I have been experiencing for several years, and it had been documented. She took a look at me, and said, ‘I think you have Myasthenia Gravis.’

Several friends of mine had told me years before they believed I had it. I just denied it because I didn’t think anyone would listen to me, but here was a doctor telling me her medical opinion. She looked me up and down, did a full medical examination, and said, ‘Double check your labs. I am sure you have MG.’

Enough said Doc. I’ll take your word. Since then, I was diagnosed with generalized Myasthenia Gravis.

I live every day with gratitude because I know my journey to getting here was a very long one. I haven’t the slightest idea how it is for anyone else. I have endured things I wish I never had to and I don’t wish it on anyone. I will say that if you find yourself in the shadows of fear and loneliness, and you’re afraid to speak up, I’m here to tell you to yell. Scream, let those emotions be heard, and let yourself be seen because that’s the only way you will have what you need. They can’t help you if you won’t help yourself.

If you or anyone is dealing with being undiagnosed or has dealt with trauma around being misdiagnosed. Or you just need a friend. I’m your sister. I’m here with you. I love you. Call on me anytime, and I’ll shoulder you home.”

Myasthenia Gravis survivor in black and white striped dress
Courtesy of Miia Shapiro

This story was submitted to Love What Matters by Miia Shapiro of Alexandria, Virgina. You can follow her journey on Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.

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