First, a bit about my conditions and how they interact: To alleviate the daily pain from Ehlers-Danlos Syndrome (EDS), a rare genetic connective tissue disorder, I have been experimenting with different types of injections for my joints, ligaments, and muscles that are either too tight or too loose. Most recently, I tried prolotherapy, which uses sugar-water (and other liquids) injections as a means to reduce pain. And yet, every round of it was painful. Although there is topical sedation, I still feel the release of the injection into my muscle or tendon. Sometimes it stings. Every time, it hurts. And ironically, the pain increases in the days following the injections.
Since I started the treatment, I don't know if I’ve improved. If this is the end of my prolotherapy journey to minimize my pain, I'll move to another experimental pain-relieving process. It's exhausting, but it's my reality, and resenting it doesn't serve me.
Living with disability, chronic pain, and depression is a journey of acceptance. I'd like to say I'm hopeful for a pain-free future, but I know acceptance of whatever comes my way is more within my control. What's less in my control is what I call the "bestie" behavior between disabilities and depression. In my experience, the lows of navigating chronic illness and disability feed depression’s hopelessness and loneliness. Research supports this association between disabilities and depression, particularly among women. The emotional waves that come in the wake of my pain management attempts and failed procedures triggers symptoms of my depression. And depression makes me feel my pain more.
In my experience, the lows of navigating chronic illness and disability feed depression’s hopelessness and loneliness.
There are times when I feel like I'm taking care of everything except for my sense of humanity. Managing my mental health and disability on top of my work and home life makes me feel like my life is a full-time job. Like I'm managing my body as if it were a company. CEO of me.
The lack of humanity I often feel became acutely evident to me when I spoke recently at Chronicon, a conference focused on chronic illness and disability (there's an app of the same name). To be inclusive to folks in the chronic illness and disability communities, there were details like a ramp to the stage, padded seats, space for assistive devices, live captioning, and more. I've been speaking around the world for years, and I've never had ramp access to the the stage. As I listened to speaker after speaker talk about health care, perseverance, and societal limitations for inclusion, I felt seen.
Unfortunately, Chronicon was a bubble—a reminder of what the wider world isn't: inclusive, thoughtful, designed for folks with different abilities. Chronicon showed me what it would be like to be fully valued as a person. But as I walked out into the real world after the event, I was still left wondering how to feel like a human being when my physical and mental disability are widely viewed as an inconvenience.
I write this because I think it's important to share what it's like for me and for others who live with chronic pain, disability, and depression. I've been living with major depressive disorder for seven years and disability for almost six years. I wanted to end my life at least three times.
The worst thing for me about major depressive disorder isn't suicidal ideation, but the place before that. Where you know that that feeling would be the next thing. This commonly happens when a test shows nothing to validate my pain or a procedure doesn’t work. At this point, you make a choice: communicate your needs to your support team—therapist, family, and close friends—or not. I always get support, but feeling the emotions is awful. It's like this loop that plays in my head, tormenting me, bullying my will to live. It's incredibly hard to be in pain, manage mental health, constantly be my own patient advocate, educate others, and live in a country that doesn't understand disability or provide equitable and affordable health care.
I'm sharing this because I know how to cope now. Previously, I would go through the same cycle that I've outlined for you, and the end result would be an attempt at my life or really dark thoughts. For weeks, I wouldn’t talk to anyone about it. I'd get up. Go to work. Maybe eat, then go to sleep. I'd stop socializing. I'd go through the motions of life without taking time to feel the ups and the downs that it brings. But, I am slowly finding ways to connect to being a human being not a human doing.
Today, I can write about it. I tell my therapist when it is all too much. I now view my disability, chronic illness, and major depressive disorder as gifts. They tell me when I need to slow down, ask for help, rest, and resist. To you, I might be inspirational or resilient, but to me, I'm unstoppable. It is nothing short of amazing to have the audacity to survive—even thrive—in a world that in ways both overt and subliminal casts disability, chronic illness, and mental illness as less than.
Today I lived another day. Tomorrow will happen. I may still cry in mental or physical pain, but I know I'll get up and keep being amazing.
If you or someone you know needs support managing mental health, please visit Mental Health America for tools and support. If you or someone you know is struggling with thoughts of suicide, please call the National Suicide Prevention Lifeline at 1-800-273-8255.
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