u/New_Government_2169

This will likely be long but it’s something I’ve never spoken about in the years since it happened and I would really like your opinion or take on it. So if you feel like it, please read and comment!

I have a multitude of chronic illnesses including life threatening ones that were genuinely diagnosed through testing. No faking or “self diagnosis” here. My life revolves around chronic illness as I’m sure many of yours do too.

Years ago, when I was first started receiving all of my diagnosis’, I discovered the chronic illness community on Instagram. I thought it was a God send and I was finally able to talk to and become friends with people who actually understood what the struggles of my life were. Because they were struggling too. It was beautiful and I loved it. I eventually become a pretty semi-well known figure in certain circles of the community and even branched out to helping others. I almost daily posted pictures of my life whether it was good or bad, at home or the hospital all in order to keep my followers up to date because they did truly care about me which was so inspiring for me to continue.

After many years however, I started to realize that not only was it obvious that some in the community were either faking, exaggerating or straight up lying about their conditions or what they were going through, but I noticed a huge shift in the community. A toxic one.

It somehow became a competition of who could be hospitalized the most. Who could get more diagnosis’ in total or more severe diagnosis’ than everyone else. Who could get the sickest and spend the longest time in the hospital. Who could get the most lines and tubes sticking out of them.

The behavior actually disgusted me because when the community first really became a thing, we were all truly posting just to share our experiences, support one another and be amongst people who understood what living with chronic illnesses was like. I don’t know how the change happened, who helped it become that way or why being the sickest was now the whole point of the chronic illness community.

So I left. I stopped posting on my account which had close to 20,000 followers. I stopped interacting with others in the community except for a rare few, because I couldn’t trust if they were truly ill or not. I quit my chronic illness based business. Just like that, a huge part of my life was gone. I was devastated to have lost the true love and support that I originally had at the start.

Recently after a multi year hiatus, (minus many, many followers) I’ve started posting again occasionally. But only pictures of my dog. I actually worry that if I were to post about my health again, I’d be viewed as trying to compete again and I definitely don’t want to be viewed like that.

So, I know that was a lot, but it was basically to be able to ask a few things.

1) Do you yourself suffer from chronic illnesses?
2) Were you around at the start of the chronic illness community on Instagram?
3) Did you notice the toxic change like I did?
4) Did you decide to leave altogether or do you still post about your health journey?
5) If you do happen to post about your health journey still, do you worry that you might be labeled a faker even though your conditions are very real? That’s a fear I have. Do you notice other creators trying to compete or one up you?

Anyway, thanks for reading and thanks for any answers! I’m just curious. And I’d like to know if others noticed the toxic change like I did. I wish the community wasn’t so competitive, toxic or full of fakers anymore. I miss the good ole days.😞

My friend shushes me occasionally, its not nice. I never confronted people for shushing me because I was afraid to. Today, he shushed me. Then I went up to him later to shush him, and then said "that's what you sound like, jackass". He was surprised. Then later he just said he just doesn't want other people to overhear. From now on, I'm gonna shush anyone that shushes me back. There wasn't really any reason to shush me either. It only makes sense to shush if someone refuses to be quiet but even then, use your words

Edit: I'm not loud or hard of hearing 🤦‍♀️.. and no, I wasn't talking about anything that personal

You know the phenomenon.

You say the word 15 times and suddenly you're questioning whether it's even a real word.

I have generalized MG and it greatly affects my legs and arms when I’m using them. If I try to push through the weakness too long and keep up the repetitive motion, the feeling of weakness becomes so overwhelming that it’s actually a little painful.

My neuro calls me “MG+” because I also have Mitochondrial Disease and other serious conditions so she said we can’t know for sure what’s strictly caused by my MG. But the literature often states that MG isn’t painful but then again, the literature also still sometimes goes against seronegative patients actually existing so I know the research isn’t all there, unfortunately. Just wanted to see if any other Myasthenics felt pain. Thanks!