One of my Facebook friends, someone I went to elementary school with, but haven’t seen or talked to in person for probably 20 years, posted the following comment to the link on my Facebook page:
“I've had RA since I was 14 and have never heard of anyone dying because of it. I get the infection risk, but this is an incredibly rare situation. I'm sorry to hear she struggled so much and was in such discomfort.”
I never knew this person had RA, as by the time she was diagnosed, we were no longer in contact. Even so, we have been Facebook friends for many years, and I still never had any inkling that we had this disease in common.
This comment really horrified me.
To me, this comment reads more like it comes from someone who doesn’t have this disease and doesn’t believe it can be this bad, rather than coming from someone who is part of this community.
To be honest, I am not really sure the purpose that this person’s comment serves, other than adding more fuel to my fire. Or as a public declaration that this person has RA but it doesn’t really impact their life.
But it doesn’t read to me as being realistic, and almost comes off as self-hating, or at the very least, in denial about the severity of this disease.
There is already enough stigma surrounding this disease, especially when you are a young person, so to hear someone in our own community making comments like that is simply deplorable.
Although while I am including this person in the RA community, it’s not clear whether or not she would consider herself to be a member.
I am taken back to a moment after I was first diagnosed, when I was receiving steroid infusions. I was trying to get the nurse’s attention to make sure it was okay to listen to headphones. I couldn’t get her attention, but the girl next to me, who was clearly receiving chemo, told me to go ahead, “You do what you have to do to get through it.”
I was so struck by that, because here she was, receiving chemo, and giving me advice, and making me feel like I was a member of the club. And we didn’t have the same disease. So if we can make connections like that with other people who don’t have our same illnesses, think about the relationships we can build with others who have RA.
But solid relationships won’t be built on comments like the one posted to my Facebook page.
The reality is, the RA community is big enough for all of us.
If we all had RA super severe, we wouldn’t be able to help each other or offer each other hope, and if we all had RA super mild, we wouldn’t need each other.
To be honest, there are times when I’m doing relatively well that I don’t feel like I belong to this community. But it’s not because people are unwelcoming. It’s my own insecurities.
I know that I am doing a lot better than some people with RA. But that’s never seemed to matter in terms of being considered a part of the group and vital member of this community. And I am so grateful for that.
This isn’t the first death I’ve heard of at the hands of RA, and unfortunately, it certainly won’t be the last.
When someone in our community dies, it should serve as a call to action. It should make us more determined than ever to find new treatments and cures.
It shouldn’t be used as an opportunity to create fractures and friction in the community. It shouldn’t make us weaker, but it should make us stronger by bringing us together.