‘Getting diagnosed was the best thing for me.’: Chronically ill woman with autism shares diagnosis journey

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“In early 2020, I got sick and stayed sick. I was forced to go on a journey to be diagnosed with multiple chronic conditions. As heartbreaking as it was, it was for the best. I was never functioning well and needed support I wouldn’t have gotten otherwise. Getting correctly diagnosed was one of the best things that has ever happened to me. I’ve finally been able to get the care and support I need after 31 years of just barely getting by. 

Ignoring The Symptoms

Before 2020, I rarely went to the doctor. I already knew about a couple of chronic illnesses, but I was tolerating them just fine. I was on a couple of medications, and I was privileged enough to be able to pretend my disabilities didn’t exist. I still had aches and pains, awful periods, and gnarly allergies, but I didn’t think too much about it. I had a mentality that everything was ‘all in my head.’ I thought I was so mentally ill I had physical symptoms. I focused all my energy on my mental health and essentially ignored the way my body felt.

autistic, chronically ill woman lifts up glasses and is crying
Courtesy of Liz Owen

I struggled, even as a kid, and would eventually drop out of school my senior year. A huge part of my diagnosis journey has been realizing I’m autistic. Like many AFAB people, I wasn’t diagnosed in childhood. I knew nothing about autism. All I knew is I struggled a lot and didn’t know why. I always had a lot of anxiety, sensory issues, and was prone to intense burnout.

I would coast along, doing just fine for a couple of weeks or months, and then suddenly reach a point where I would have to lie in a dark room and be unable to speak for a time. I would have gruesome repetitive thoughts and was in so much physical pain. I was unable to get up from my bed, and when I did, I would be prone to feeling faint. I even fell over sometimes.

This all started when I was quite young, but I thought I was severely mentally ill. And it wasn’t just me. Doctors were telling me it was all in my head so much that I believed them. I didn’t even think of autism as a cause, and I definitely didn’t think about the physical disabilities I now know about. 

disabled, autistic, chronically ill woman laying with wires, mask, and cool pack
Courtesy of Liz Owen

When I began to get really sick, at first, I tried to ignore it. I said to myself, ‘This has always happened. You can handle it.’ I didn’t do what I needed to do to get care, and that took a toll on my health. I had daily hives, shortness of breath, low oxygen, and a lot of pain in my joints and lymph nodes. My body was swelling and flushing, and my hair was falling out. I could no longer pretend it wasn’t happening, but I continued to try. I continued to work virtually and push through as best I could. I was headed for burnout and didn’t see it coming. 

rash on the arm of a chronically ill woman
Courtesy of Liz Owen

Seeking Help

Eventually, my even-keeled partner had their first panic attack because of how worried they became about my health and wellbeing. They noticed how much hair I was losing, and it was a physical representation of how sick I had become. I agreed to get care, but I was afraid of not being believed and told it was all in my head. I made the call anyway.

I found a primary care doctor and told her everything. Unfortunately, like many other people with chronic illnesses, she didn’t take my concerns seriously. She focused on nitpicking my already nutritious diet, and completely ignored my pain and concerns. She told me to, ‘Not worry about it so much.’ I left not only angry, but disillusioned with the medical system. I honestly never wanted to go to another doctor ever again. I felt so foolish even having told her how I was doing. I seriously questioned my sanity and asked everyone I could if they thought I needed help. 

My therapist and my partner pushed me to find someone else. They were rightfully scared for me, and I had to work to trust my own experience in my body. I did hours of research and found someone who made me feel hopeful. The doctor I found listened to me and was as concerned as I was with my pain and other symptoms. I went through a ton of testing, and the diagnoses started rolling in all at once. 

autistic chronically ill woman at tulip field with her partner
Courtesy of Liz Owen

In the span of six months, I was diagnosed with hypermobility spectrum disorder, postural orthostatic tachycardia syndrome, small fiber neuropathy, and the strong suspicion of mast cell activation syndrome. Yes, that’s a lot, but it also explains a lot. I have had symptoms of most of these for at least half my life, and now I have answers.

Getting a new diagnosis is stressful and scary, but if you’ve been experiencing symptoms for a long time, it’s also a relief. I now have the words to explain the experiences I’ve been having. I have verifiable physical illnesses that can’t be denied. My joints are wonky, my nerves are broken, and my heart beats like I’m running a marathon when I stand up from the couch.

chronically ill woman's Apple watch displaying a high heart rate
Courtesy of Liz Owen

Now that I have these diagnoses, doctors and other medical professionals are more likely to take me seriously. I’m able to say I have this, this, and this, and they know what’s going on with me. I also have other doctors who corroborate what I say in their notes. I’ve been able to use this new found information to have my diagnoses treated appropriately.

I’m getting physical therapy, and I’ve started new medications. I’m still on a search to figure out exactly what’s wrong, but now that some things are confirmed, I’m actually getting support. That’s what I needed to get what I need to do my best. You don’t need to have a diagnosis for this, but it certainly helps. Especially if you struggle to trust your own intuition. 

chronically ill woman standing in front of her pill box while organizing them
Courtesy of Liz Owen

Life With A Diagnosis

I’m now able to realistically create a sustainable life. I’m able to get accommodations at work, and I’m able to better ask for what I need. I don’t push myself past my edge and am working on conserving energy over getting work done. I’ve been able to join a wonderful community of people who are also chronically ill, disabled, and/or autistic. They’ve shown me that despite the struggles of daily life as a disabled person, we can live a life filled with activism, mutual support, and love. 

I’ve learned throughout this process that if you are disabled, you should think of yourself in that way. It’s empowering to admit to yourself that you need support. Joining the disabled community is perhaps the most important thing a chronically ill person can do. If you don’t, you may be focused on fighting something that may never change. Acceptance is the first step to thriving.

chronically ill woman sitting on a blue couch in professional attire
Courtesy of Liz Owen

Another thing I’ve learned is that diagnosis is a positive thing. As scary as it is, getting a diagnosis opens doors you may not have even known were closed. It’s an avenue to support and community. Even if you don’t have a diagnosis yet, trust your intuition. If you feel constantly sick or are in pain, then you’re sick or in pain. Trust your gut. It’s telling you something. 

It’s also important that you know there are ways to combat some of the problems with our medical system. If you are struggling with a doctor who is not listening, there are many ways to stand up for yourself. You are the only one who knows what it’s like to live in your body. You are the only one who feels your pain. It’s important you get the care you need, even if it takes a lot of self-advocacy. You matter! Your pain matters! 

I’m still on my diagnosis journey, and I’ve got a long way to go. I’m still meeting with new doctors and learning new things about myself and my body. As difficult as it has been, I wouldn’t change it for the world. Being disabled is part of my identity, and accepting that I’m autistic, chronically ill, and disabled has made my life easier, more fun, and less chaotic.”

autistic, chronically ill woman wearing a beanie and sitting on a bench
Courtesy of Liz Owen

This story was submitted to Love What Matters by Liz Owen of Portland, OR. Be sure to subscribe to our free email newsletter for our best stories.

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