Mental Health Ableism: what our support groups are getting wrong

In January, I was poking around in EPIC’s MyChart, an EMR system, to try to find information on both my MRI results (because waiting a week was nerve wracking) and what exactly my former rheumatologist was treating me for… Turns out NOT SJIA, but polyarticular JIA. Frustrations abound.

But I digress.

I found an after visit summary from my therapist I was seeing a few years ago starting before Laura passed away. He was helpful in dealing with the grief from her loss as well as the issues I had with my family situation, but wasn’t necessarily as helpful for other issues. I knew that I had been dealing with depression and anxiety, but he put down two diagnoses that I hadn’t seen for those – Generalized Anxiety Disorder (GAD) and moderate depression.

It would’ve been nice to know what was going on with me the last couple of years before last month!

I had a lot of life changes in the last year, so dealing with both was very difficult for me. Wanting everything with the wedding, with my family issues, etc, to go right brought about a lot of anxiety. I’m go grateful for how wonderful that day turned out to be. I’m just floored at how much laughter, fun, and love there was.

I met my dad and his family, which was awesome but a little scary. I’ll admit that. There are no words to describe it. My sister moved out to California and then discovered she was pregnant again. T and I moved and I changed jobs as well as having worse health issues. We adopted three adorable guinea piggies. T’s therapist retired, who has been a huge help to us both. He’s known T a few months longer than I have, and so he’s seen our whole relationship. I think around October I was doing really well, but when my hip issues started in December things went downhill again.

Me? Maybe

I have noticed with that change in my mental health how differently I’m approached by others in the chronic illness world. When I was doing well and putting more inspirational things out there, I was getting more feedback – mostly positive, but still. Now, when I’m a little more in need of that support, it seems that others aren’t always as willing to give it. People think I’m being extremely negative all the time by discussing what’s going on with me, my fears, and my anxieties. As an optimist at heart, that bugs me.

We all handle our physical illnesses differently, just as we do with our mental health struggles. Mental health is paramount to physical health and vice versa, which is a huge part of why those with issues on one side often end up with issues on the other. There just seems to be a huge disconnect in the chronic illness world between those who discuss one or the other.

A related issue seems to be the lack of support if you don’t fit one mold. A lot of that depends on those you know or what subcategory of illnesses you have, but it’s still an issue. I know some people who have been treated poorly because they’re able to do more physically, but I’ve also seen that go the other way. Right now being laid up, I see it a lot more.

Being MIA from being active is driving me nuts

In line with that, there are those who believe that if you’re positive you’ll do better. There are studies that go along with that, but that also state not to deny your emotions… Personally, if I hold emotions in, they build until I have a major mental health issue or flare up physically. I’m not the only one who knows/thinks that you have to give yourself permission to deal with your feelings.

There is a difference between encourage positivity and kind of pushing it on people, remarking things akin to “if you just focus on the good/light/etc, you’ll feel better.” That type of thinking is actually a form of victim blaming.

It’s not as easy as a choice

It’s so similar to when someone says “my uncle’s brother’s former roommate had that and he just started thinking happily and he’s fine now.” It really bothers me, especially always being someone people refer to as the ‘Pollyanna’ of our friend group or at work, etc.

Honestly I just really hope that this post gets people talking about mental health more than just stating that there is a problem with how we approach it as a society. We need to start asking how to treat others and ourselves with more compassion. I’ll start – Thursday at my appointment with my primary care doc, I’m going to ask about medications for depression. Things aren’t super horrible right now, but they’re not as good as they were… and being laid up and dealing with recovering from a surgery is going to make them worse. I’m going to take some proactive measures and see if I can’t get myself to a better place mentally with medications since I can’t balance it on my own with coping mechanisms and meditation. They both help tremendously, but not enough.

Have a cuppa!

If you’re looking for resources on self love/care/etc, wander up above to the resources page.

What do you think? Are you an optimist, realist or pessimist? Does thinking positively help you, or does it frustrate you when people suggest that as a solution? What’s your experience been like?