Mental Health & Disability
Disability and Determination is a weekly newsletter about my experience navigating life with a rare disability. If you like this post, feel free to give a click on the ❤️ symbol below. This will help me get discovered by others on Substack. To be notified of future posts, drop your email in the field at the bottom and click the Subscribe button. If you’d like to further contribute, I also offer a paid subscription option (that includes extra monthly content), or you can Buy Me a Coffee ☕ I’m glad you’re here ☺️
May is Mental Health Awareness Month. I did a webinar recently with the MDA (Muscular Dystrophy Association) and the topic was Mental Health and Self-Care.
I wasn’t sure how much new info the webinar was going to give me. I feel like I’ve tried just about everything for my mental health and self-care, especially since the pandemic in 2020. I’ve tried a variety of therapists and even they haven’t been able to offer much help. None of them ever had disabilities or understood what it was like to have a patient who has one, and the last thing I need is someone who doesn’t get it giving me platitudes or toxic positivity about my life, or not understanding why I still have to be so careful to avoid getting COVID.
That being said, I actually got a lot of great information from the webinar. They shared some helpful links, but they also shared a fact I had never heard before: disabled people experience anxiety and depression at a rate 4.6 times higher than non-disabled people. It’s not a surprise to me at all, but it was still comforting to hear that I’m not alone. The leader of the webinar (who is a licensed therapist with a disability) also addressed COVID as something still going on (not “over”). She approached the topic as something that people with muscular dystrophy still have to be very careful and cautious about because muscular dystrophies often entail respiratory complications. She acknowledged that she was very much still homebound because of COVID too. That made me feel so seen and understood.
I’ve always struggled with my mental health. Depression was a big part of my life when I was younger. I didn’t know anyone like me. There was no internet to connect with anyone like me. I was always acutely aware of my difference from my classmates and that can really weigh on a person. I had no real sense of self-worth. I just wanted to fit in and have everyone like me.
Anxiety was always a part of my life too, I just didn’t have that term for it for a long time. I was just told I was a “worrier”. But anxiety is a much bigger deal than “worry” and can even require medication to help regulate it. My anxiety skyrocketed after 2020. It’s improved since then, but it’s still very much there. I can’t go to an event or do most anything outside of the house without experiencing at least a little bit of anxiety. I went to Trader Joe’s recently and I had anxiety the whole time leading up to it about whether or not I would be able to find a close parking spot, especially because avoiding falling now is absolutely crucial until I get my bone density built back up. Thankfully I was able to get the last disabled spot, but this is a variety of anxiety that’s just always with me. I always get that little pit in my stomach before I go somewhere, hoping I’ll be able to have somewhere to park or that I won’t encounter unexpected accessibility barriers. That’s just the tip of the iceberg when it comes to accessibility challenges I can face when I go somewhere too.
So between COVID, my disability and my osteoporosis, I’d say it’s pretty damn understandable that I’ve struggled with my mental health. I have a lot of great tools to help: meditation, journaling, accepting instead of fighting my feelings, a great support network, and hopefully a dog soon! Writing and connecting with other like-minded Substackers here has been so therapeutic too.
Reflecting back on all of this, it’s no wonder that our rates of anxiety and depression are higher than non-disabled people. The rates for disabled people of color are even higher too. I didn’t even include societal views on disability, the ability to work, looming Medicaid cuts, a lack of resources, having to prove you’re “disabled enough” for those resources, dating and relationships, not getting the medical care you need, not being believed, and dealing with massive amounts of pain on any given day above either. It’s a lot to deal with.
If you’re struggling, especially with everything going on right now, you’re not alone. The webinar shared some helpful links that I wanted to share here too if you’re looking to meet new people or find the mental health care you need (some of these are especially for people who are low income too):
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I think the saying goes, "Courage is knowing the dangers and doing it anyway." So, while you're in the midst of the completely rational anxiety you're experiencing, remember the courage that goes along with it, too, Jackie. ❤️ xo
I also write about disability!
https://open.substack.com/pub/maryschroniclife/p/my-identity-is-not-in-my-illnesses?utm_source=share&utm_medium=android&r=55di9w