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.
We're all "sick." It's not a contest. You don't "win" by being the sickest OR by being the least impacted by your disease. I'm not sure what she was trying to convey with her comment. :-(
ReplyDeleteMy guess is she was trying to reassure herself that this wasn't something she needed to worry about. Some people have to severely downplay their illnesses in order to get by in their day-to-day life.
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