I still belong to several FB groups for MS, even though that’s no longer my diagnosis. I feel like it’s necessary to stick around to remind people that the diagnosis doesn’t mean that they’re doomed.
I do feel like it’s acceptable for me to say such things, even though I don’t technically have an MS diagnosis anymore. In all actuality, what I really have is worse than MS in many ways, but the symptoms are similar. And I still think there needs to be more voices in these groups, telling people (especially those who are newly diagnosed and scared) that having MS requires some adjustments sometimes and although I have undoubtedly gotten worse over time, it’s largely up to you to have the mindset that you still have a good life anyway.
I may rub some people the wrong way by saying this, but a lot of people in those groups (as I’m sure is also true for people in other illness-focused support groups) often seem extremely negative. I can completely understand how newly diagnosed people would get more scared of their future, especially after reading a lot of those posts.
I get it that I have advantages some of them do not, such as a supportive partner and the fact that I don’t have to push myself to work a physically demanding job. I don’t mean to sound unsympathetic to their struggles at all.
But I can also tell that some people are just constantly in “poor me” mode and have made their illness a big part of their identity. For example, it’s a very common thing for people to get “MS Warrior” tattoos. I obviously wouldn’t get one for a number of reasons and maybe they’re somehow empowering to those who have them. But the truth is that most of them seem anything but empowered. It’s not like they get these tattoos encouraging them to keep fighting and staying positive; it often seems more like they want a permanently visible reminder of what they’re going through.
If that works for them, good, I guess. But to me, it seems like defining all of the complexities of who you are as a person by a health condition you have makes me really sad.
In truth, I’ve probably lost quite a bit in the 9 years since my official diagnosis—most significantly that I can’t work full-time anymore. Still, I choose not to focus on what I’ve lost, but on what I can still do instead.
I get it that sometimes the effects of chronic illness do really suck and sometimes it feels better to vent about it. But I also see a lot of people who never seem to have good days in the midst of their struggles, and I think your mindset has a lot to do with that.
My chronic illnesses do indeed sometimes suck but it’s rare that I spend entire days feeling sorry for myself. There’s so much more to me than my illnesses. I just think about how I want to be remembered and it’s damn sure not for complaining about my suffering. I want people to say, “wow, she accomplished so much considering her limitations.” I want people to be amazed by my perseverance and positive mindset.
Millions of people around the world deal with some type of suffering, many of them suffering far more than I do. I’d honestly rather see what I can do to help those who are genuinely suffering than sit and wallow in my own.