For some, disability is a sudden event. For others, they are born with it. That wasn’t how it was for me. No, instead it was a slow change. Almost like aging, only with every passing year my body got sicker and weaker until finally disability was my new normal. I’m only thirty-three, but I suffer from constant pain and other debilitating chronic issues, including mental illness.
In childhood I mainly suffered from asthma and lung related complications. I had pneumonia five times as a kid, collapsed lungs at eight, and way too many hospital visits in-between for a child. By my teen years I had migraines and suffered from depression. There was also ADHD, but I would not be diagnosed until I was thirty. The fact that I was so physically ill as a child meant my developmental issues were overlooked or explained away as a child who was too sick to always play with the other children and learn to be social and make friends.
You never know when the prime of your life is until after you’ve lived it. It’s only in retrospect can you recognize when life was the most active, the most healthy, the most fulfilling. For me it was my early twenties. Things were really good for me, I had lots of friends, (many of which I met at anime conventions) a steady job and even moved out to live with roommates for a while. I traveled up and down the East Coast to anime conventions to cosplay and meet my friends. I partied with local friends almost every other weekend. I drank too much, but who doesn’t in their twenties? I did have a mishap in 2008 and badly sprained my knee, causing patella subluxation. It caused lots of knee pain, but I could still walk, and only rarely needed the help of a cane. Still, I didn’t consider that disabled.
I would say things started to change noticeably for me in 2011, when I was twenty-six. I began to have stomach issues and relapsing depression. To top it all off, I realized I was self medicating an anxiety disorder with alcohol. However, now my stomach no longer tolerated it, so I had to face my anxiety and deal with it the right way.
Eventually I was diagnosed with IBS-C and work became a very painful and uncomfortable place to be. This is when things really started to go downhill and my work attendance suffered extremely. And yet, despite all I had been through and suffered, I did not consider myself disabled. No, it wasn’t until I went to work one day and got up to go the bathroom to find I couldn’t stand up straight without agonizing pain. I ended up laying down on the floor in HR waiting for an ambulance to come get me. I knew then something was seriously wrong and the word disabled started to enter my vocabulary.
The incident itself was the result of a muscle spasm, but it pointed to something else that was becoming a growing problem. I was suffering more and more from lower back pain and soon I would find out it was because of a herniated disk. More recently during a procedure at my pain clinic, I learned it happened because I have an extra vertebra in the lumbar region of my back.
Living with constant pain changes you. You become bitter and consumed with how much pain you are enduring every single day. Sometimes you can bear it, other days are full of tears, and even others are full of anger. It would come as no surprise that my worsening physical health took a huge toll on my mental health too.
However that’s not the end of the journey. While being treated for my chronic pain I was diagnosed with Fibromyalgia, a neurological pain condition with no cure and limited treatments that I mostly cannot take. Oh and my good knee is going on me too, because why would I need my knees? Suffice to say, I am using my cane more and more these days, sometimes from pain and other times from balance issues.
Lastly, as I mentioned before, I was recently diagnosed with ADHD. I suspect I may have autism, but as an adult I am unable to get a diagnosis through insurance. I would like to be tested for autism spectrum disorder, but I may never get that chance. Regardless, self-diagnosing has given me the tools to better understanding myself and why social interactions are so difficult for me. Learning about both ADHD and autism has been very eye-opening for me; executive dysfunction, sensory disorders and overload, stimming, and so much more, things I never knew I had or dealt with. Unbeknownst to me, I was dealing with conditions and symptoms that handicapped me in ways I could never put to words, but now I know. Now, along with an understanding psychologist, I finally have the language, pills, and tools to cope.
I used to lay in bed at night crying because I had no friends. It wasn’t until I met like-minded individuals as an adult, geeks like me so to speak, could I actually connect with people. And of course some of those people are a lot like me in various ways. Finally being able to make friends with people and bond over shared interests cured a loneliness in my heart that the child I used to be could not. Learning about these developmental disabilities has helped me put a lot into context. I’ve had a pain in my heart for so long that only now can finally begin to heal.
I have glossed over a lot about my disability history, which is inevitable in a blog post. Most of what I have been through with my health would fill a book. My intent in writing this post is to just give people an idea of where and what I come from. I intend to use this blog to write a lot about disability, chronic pain, and ableism, and while it may not be necessary I open up with such a personal post, I wanted to so I can connect with others like me. I hope this blog can eventually become a small little safe space on the internet for disabled people to talk about their issues and connect with others.
I am a disabled woman and this is my truth. I live with pain every single day of my life. I have constant stomach problems, migraines, and sometimes need a cane to walk. I also struggle with mental and developmental disabilities, which are just as severe and debilitating as my physical ones. Despite all this, I am a bird watcher, photographer, and trying to be a writer again. I may be out of work, but I hope one day I will return to it. Though, I have to accept the reality that I will always be in pain and will only be able to manage it with pills and injections in my back. There is no cure. This is my new normal.
I could never have imagined when I was ten what my life would be like in my twenties, or that by thirty I would be disabled. I can’t even begin to imagine what my forties might be like should I live that long. I can only take it one day at a time and I hope you consider following me on my journey.