‘It’s impossible to explain how I was able to function.’: Chronic illness warrior’s difficult Ehlers Danlos Syndrome diagnosis

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Diagnosed With Ehlers Danlos Syndrome

“When the unknown oncologist said simply, ‘It’s EDS,’ I burst out laughing. This laugh came from a place I didn’t know existed or perhaps didn’t know was still alive deep inside me. Belief and disbelief, overwhelmingly and equally, simultaneously. Indescribable, soul altering relief.

The smile the doctor gave me in response, the way she somehow knew I would know ‘EDS’ stood for ‘Ehlers Danlos Syndrome.’ That she had seen this reaction, patients just like me, many times before. Because finally the world is realizing ‘Zebras’ aren’t so rare.

person with chronic illness laying in hospital bed
Courtesy of O. Lee Lorraines

This blood test came from the Mayo Clinic. It had been sent there by the oncologist I’d been seeing at the time. She had run a new test after I’d come in presenting random, severe bruising on the back of my thighs. She called with the results while I was at work. ‘I honestly have no idea what I’m looking at. Based on this you should absolutely have Leukemia, but you also can’t possibly have Leukemia. These results are… confounding.’

It’s strange to feel a sense of pride hearing an oncologist looking at your blood results and using the word ‘confounding.’ My blood cells basically function like that of Leukemia blood cells. When run through (the proper) tests they flag all but the last markers for Leukemia.

The confusion came because my oncologist had never seen a patient with those first markers and not the final one. If she sees the first markers, she could always guarantee she would see the last and knew she was dealing with Leukemia. Until she met me and my broken blood cells.

back of thighs covered in random bruises
Courtesy of O. Lee Lorraines

I’m O. Lee Lorraines. I’m Autistic. I have Ehlers Danlos Syndrome, plus other comorbidities, and CPTSD. I currently live in my home city of Minneapolis, Minnesota (specifically in South Minneapolis) where I’m earning my master’s degree in research and writing in hopes of going on to earn my PHD in Sociology. (Hopefully at my dream program in my chosen dream home city, New Orleans!) I’m also a Full Spectrum Queer Community Doula, focusing in postpartum and death work… I’m the Disabled Doula!

It was an incredibly long road to my diagnoses. This is not uncommon in the EDS community. Like how the professional mental health community is discovering it’s not uncommon for women and people assigned female at birth (like myself) in the Autistic community to not receive a diagnosis until much later in life (also like myself). There is also a link that is beginning to be discovered between Autism and EDS.

person wearing a scarf with pink hair smiling
Courtesy of O. Lee Lorraines

First Signs Of Chronic Illness

I started to know something was physically different, and seriously wrong, with my body when I was 16. I’d always had painful joints, heavy periods, and other symptoms I considered normal. But around my teen years I felt things starting to… ‘slip’. I knew I felt different physically than I did before… less well. And I could tell my physical health was not as robust as that of my peers.

After I was treated with iron infusions at the age of 20, I was told I was ‘cured.’ When I told the oncologist I was working with then I still felt this same ‘unwellness’ (to put it as plainly as I can) no further tests were run. I was told to ‘keep working on my mental health.’ I did (and always will). But I knew this was something else.

person with chronic illness sitting on the floor in front of a book shelf
Courtesy of O. Lee Lorraines

I was incredibly fortunate to find my general family doctor. If you are able to, find a GP you trust who is willing to say, ‘I don’t know.’ I can’t explain the feeling of complete utter relief that brought me to actual tears when Dr. Vang said, ‘I know there’s something very seriously wrong with you. But I have absolutely no idea what it is.’

She advocated and fought for me for over a decade until we sat down in that same office, and she looked at me again. We smiled at each other when she said, ‘Wow. It’s EDS!’ I said, ‘I know, right?!’

Like many people, I thought 2020 was going to be a year of incredible, positive change. It was… something else entirely. Far more enlightened and eloquent educators have written about all the world traumas that occurred during and after that year. And the incredible tragedy, loss, and trauma that has unfolded in my community in that year since. I still don’t and may not ever have the words I feel appropriate.

In my small, personal world, I began by having to leave the job I loved working in a preschool infant room due to the medical team I was with not understanding my EDS diagnosis. For over almost two years I had been telling them there was something very wrong with my shoulder and hip. Even after the EDS diagnosis they refused to run the proper testing (only x-rays, which I told them would not show any of the connective tissue issues EDS impacts).

chronic illness warrior crying while laying in hospital bed
Courtesy of O. Lee Lorraines

After two more years of physical therapy and occupational therapy, while losing more function (often having to pull over driving home from work, the pain so bad my vision would completely go out) I knew I had to seek other care.

The first thing the surgeon at TRIA Orthopedic said after finally completing one of the surgeries I needed in the beginning of October 2020 was, ‘They must have a really high tolerance for pain.’ By the time the surgeon had cut into my AC joint there was almost no cartilage left inside. Just lots of arthritis.

A Life Changing Loss

I had begun my master’s program after being forced to quit working, but it felt like my body did not want me to participate in any of the goals I had for myself. Then just as the world and my community was falling apart, my family shattered. At the end of October 2020, I lost my little brother, Lukas, to complications related to alcoholism.

person sitting on floor with ashes of brother in coffee tin
Courtesy of O. Lee Lorraines

The loss of my brother, followed in the next 26 months by the loss of my last living grandparent, my living, now otherworldly spirit guide, Indy Llew Jones, a friend to suicide, substance abuse, homicide and finally the recent loss of a former very close friend.

My relationship with her ended abruptly and painfully in the spring of 2020 when she discovered I finally informed her sister I was concerned about her drinking. Concurrent with my ongoing intensive trauma therapy these different grief experiences led me to seek education from many experts, sociologists, psychologists, and Death Doulas.

This is how I learned that not only was a ‘Death Doula’ a thing (and that I had been doing a great part of the work without knowing it) but that Full Spectrum Doula work was possible. In a way it’s all my little brother’s fault (for which he absolutely loves taking full credit.)

person with chronic illness sitting on walker while in park reading
Courtesy of O. Lee Lorraines

It’s impossible to explain how I was able to function daily. I wasn’t aware that many of the serious symptoms I live with were not baseline human functioning. Like, ‘Hold up, I’m supposed to be pooping more than once or twice a week?!’ Pepto-Bismol should hire me as a spokesperson. I genuinely don’t know what it’s like to have a functioning gastrointestinal system or blood cells or not have fluid pressing onto my brain.

My perception of dealing with and tolerance of pain is entirely different than most others. And there are many other people in the chronic illness and disabled community who live in levels of pain and illness that I can’t comprehend. I just know most of us really don’t like the pain scale of 1 to 10 they ask you (I prefer the smiley to the frowny faces).

chronic illness warrior takes a selfie
Courtesy of O. Lee Lorraines

Looking To The Future

This year was a year of immense pain, change, growth, and healing. I finally got the IV port I needed and was able to up my IV fluids for my POTS and gastroparesis to three times a week at home. I cared full-time for my disabled veteran father while sleeping out of my car. I continued in school on my master’s thesis. I started using my true, chosen name.

I wish I could say everything was looking positive. That I was certain of the future. But there’s nothing but uncertainty and fear. Disability and chronic illness often coincide with poverty. Abled bodied people tend not to notice the ‘ability to stand for up to 7 hours’ or ‘lift up to 30-50 pound’ requirements many jobs will put in their applications.

person sitting in trunk of car with IV bag hanging from trunk
Courtesy of O. Lee Lorraines

Even if those don’t exist, employers would much rather hire a healthy person than work around the schedule of someone who needs to go to weekly treatments and do multiple weekly infusions. When we can find gainful employment, insurance becomes an entirely new battle.

Pre-existing conditions make paying out-of-pocket costs for any employer provided insurance virtually impossible, particularly if you are a patient like myself who has prescriptions and treatments prescribed by my doctors that are not covered at all by any insurance and cost over $15,000 a year (if I had the wealth access to afford them, which I never have to their entirety).

I am going to keep working. On myself. On my education. On my work. So one day maybe I can support my animals, and myself, the way I have always dreamed. But more importantly so I can someday, maybe, be a little of the help for someone that was not there for me.”

person holding IV tube in their mouth
Courtesy of O. Lee Lorraines

This story was submitted to Love What Matters by O. Lee Lorraines of Minneapolis, MN. You can follow their journey on Instagram. Join the Love What Matters family and subscribe to our newsletter.

Read more stories like this:

‘You can’t have these symptoms because they do not match your appearance. You must imagine them.’: Woman with Ehlers-Danlos syndrome shares journey to diagnosis, reclaiming her life

‘Can you step into my office?’ Anticipating an assignment, my research advisor abruptly stated, ‘You know you’re disabled, right?’: Woman diagnosed with Ehlers-Danlos Syndrome, POTS discovers identity after lifelong battle with chronic illness

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