Support groups and their annoyances.

If you’re a sick person and active on social media, there’s no doubt that you’re a member of a facebook support group for your illness. I’m a member of quite a few of them, and sometimes ask or answer questions.

There are a lot of occasions where I feel like I get annoyed with people rather than have my question answered. I’m not quite sure why. Perhaps I should leave my questions for my doctor to answer rather than a perfect stranger, but when you have a strange symptom or just want to vent, you don’t really want to be calling your doctor every 5 minutes, so you resort to asking other sick people. But I always walk away feeling judged on these groups.

I asked a question about chiari, and happened to metion that xanax has helped my headaches tremendously for some mysterious reason, and a person felt the need to tell me to “be careful because xanax is VERY addictive.” I’m not sure why they felt the need to tell me that, not to mention the fact that I’m pretty sure they are wrong. Just because people abuse xanax doesn’t mean it’s addictive(although I’ve read about physical dependence, which is different than addiction). And it doesn’t mean I plan on abusing it any time soon. I take it to alleviate side effects from Solumedrol, which feel similar to anxiety, and I happened to notice it helps my headaches, so much so that I’ve gotten some of my life back. So just chill the fuck out on your “information”. I feel judged because I admitted taking xanax, which seems to have a bad reputation. I don’t abuse it, and I take it for legitimate issues, which a lot of people do.

Yesterday I posted a lupus question about sudden weight loss and if it could be related to my benlysta infusions. I didn’t get my question answered, and that’s ok, it was a shot in the dark. But I got bombarded with a bunch of replies from overweight people talking about how they wish they could lose weight. That’s all fine and good, but they missed my point. I’m skinny to begin with. It’s scary to me when I lose weight. I’ve been worried about it and trying to eat more calories for weeks, so far with no results. To have a bunch of people commenting saying they wish they had that problem is really insulting to me. Skinny girls get picked on for their weight too, you know. How would you like it of a stranger came up to you and poked you in the ribs and said “Don’t you ever eat anything?”

Yes I do. I’m sick, dipshit.

And no disrespect to people who have troubles with being overweight, especially when you’re sick. I am not belittling your issue, I am just tired of people belittling my issue. I know it’s a battle, as is my issue with putting and keeping on weight. I’m unable to exercise the way I want to, which could be responsible for my weight loss, because I’ve lost so much muscle mass from not working out.

Addison’s disease can cause weight loss (which I don’t believe is the cause of mine at the moment) and it can also cause people’s skin to become extremely tan for no reason.(remember JFK and how everyone commented on his golden skin? Yup, Addison’s) I’ve actually seen a tweet from a girl who is studying to become a nurse that actually said something to the effect of “Addison’s disease makes you skinny and tan, I want that disease.”

It can also kill you too, dumbass. I shutter to think that you are going to be working in a hospital.

I expect these ignorant things from healthy people, but not from sick people. I thought they were more open-minded than this. My point is, just be careful. No sense in having your feelings hurt by a total stranger.

And so concludes my rant for today.


1 Comment

  1. I have had times, but not in the last few years, when my lupus slipped into extreme weight loss mode. Lupus is always going to be unpredictable, and that, too can be a sign of flare. Lately, I have the opposite problem, but I remember all too well the times when I fought to stay over 100 pounds. No energy, and I ate like a horse to no avail. Hang in there! LA

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