People who suffer with chronic illnesses have so much to deal with on a daily basis, and on top of it all, so many people don’t even believe us when we say we’re sick. On top of everything, trolling exists, and people think it’s necessary to bring down people who are already suffering so much.
About a week ago, I received a number of comments on multiple Instagram posts that completely took me aback. They were rude, hateful comments that seemed almost personal, and as if this person knew me. But I didn’t know this person, and they didn’t know me, even though they were following me on social media. However, something they had read or seen on my Instagram made them think it was okay to write these horrible words on my page, and it was hard to not take it personally and get upset over it.
I have a history of being doubted and being gaslighted, in fact, a lot of people (women especially) who are chronically ill do. More of that rhetoric brought back the old feelings and emotions, and triggered my PTSD about being told “it’s all in your head” while on the road to diagnosis and treatment.
Even before my decade-long fight with POTS, I had multiple symptoms of random things over the years from childhood and into my late 20s (I didn’t get my POTS diagnosis until I was 29, and it was from there that I started to get more diagnoses). Doctors ignored my complaints at every turn instead of doing any testing or trying to get to the bottom of my symptoms. Now I know those symptoms were a combination of Hypermobile Ehlers-Danlos Syndrome and undiagnosed autoimmune disease, among others. Decades of being sick with no answer, and no attempt at an answer, only to have it suggested it was all in my head.
In addition to the old feelings being brought up again, someone pointed out to me that this person had invaded my safe space, and that hit the nail on the head.
Trolls are on every corner of the internet, but I had created my little corner purposefully and with good intentions– trying to share my story, raise awareness for the number of chronic illnesses I (and millions of others) suffer with, and be a voice in a community that desperately needs more voices. This little corner had become my safe space, and these unkind words felt like a bomb going off in the shelter of the home I had built for myself.
The first comment was in response to a post I made months ago, back in March. It was a graphic I made that said “They should call them doctor’s disappointments” (as seen below).
In the post, I wrote about how I’ve been to over 50 doctors in the past decade, since my symptoms of POTS first began. As the symptoms started to pile up, so did the doctors, and as the diagnoses started to add up, I needed even more specialists. One of the reasons there’s been so many is because there are very few doctors who are knowledgeable on my conditions– POTS, Ehlers-Danlos Syndrome, Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, etc. These are all conditions that are not nearly as well known as they should be, based on the amount of people who have them.
This person responded to this post and said “Amazing research. All textbook perfect. Boy do you have energy. Congratulate yourself on being a first class bone idle liar (obviously they meant bona fide, but either did not know the real spelling or had an unfortunate typo), fraudster, self-obsessed beyond imagination. Selfish manipulator of people, such vague “diagnoses”. Most people in my life have anxiety ++++ but haven’t brazenly gone to zillions of doctors because they don’t have Munchausen’s.” Throwing the Munchausen’s in there is what really set me off. It is so cruel, so uncalled for, so wrong.
For those who don’t know what Munchausen’s is, it’s a psychological disorder where someone pretends to be ill in order to be “cared for” and be the center of attention. You may have heard of Munchausen by proxy, which is shown more in movies. That is where someone else, typically a caretaker of a child, but it can be a spouse or partner as well, fakes symptoms or actually makes the person sick (like slowly poisoning them to cause real symptoms that can be mistaken for something else).
Munchausen’s is thrown around as a slur word against the chronic illness community. What the people calling us this don’t understand though, is that Munchausen’s is actually pretty rare, and actually occurs more commonly in men than women. But I doubt many men are getting these words thrown at at them like women are, because of course, women are less believed overall.
As if that first rant of hers wasn’t bad enough, she commented again on the same post an hour later and added more. “I’m surprised that ANY doctor even lets you through their door. You should NEVER get disability and live your life researching vague conditions on the backs of decent people. OMG you take the biscuit. (What??) Give disabled people a break and take your posing, pouting, whingeing (is this a word I’m not aware of or did she mean whining?) face off here.”
Then with one final hurrah, she found my post about how I was denied disability (I’ve been fighting for almost 7 years and I’m still denied. For those who haven’t read it, here are the stories. Part 1 and Part 2.) The entire thing is very upsetting to me, and I am very emotional about it. She commented “Brilliant news, Munchie.”
My response at first was to cry. I’m sharing my story in this safe space I’ve been trying to create, and it was rocked off its foundation. But I didn’t cry. Not fully at least, although there were definitely some tears. Instead, I got mad. Really mad.
I immediately reported all three comments and blocked her. Why was this person even following me? For what purpose? It wasn’t a brand new follow right before she commented that, so she’d been lingering around for a while. She’d been following me for some time, however long, but why? And why was she suddenly looking back at my posts from months ago and deciding now that I was a liar? For whatever reason, it wasn’t okay.
I posted about it on my stories on Instagram and received many responses from other people in the chronic illness community. The outpouring of love and encouragement was exactly what I needed to hear, it was nice that the community had my back like that.
A few people who also are trying to raise awareness on Instagram told me that they’ve also received these kinds of messages from people, and that there’s even a Reddit group designated to “call out” people who they deem not really chronically ill, who are “faking it”. They call them “Munchies”, a play on the word Munchausen’s, just like that girl called me.
My curiosity is peaked, but for my own mental health I am not checking to see if they’ve talked about me on there. I can’t handle it. I’ve been through so much in the last 10 years, and I don’t need to read these spiteful, abhorrent words.
This entire experience really opened my eyes though….. that this is just what we’re up against. As if we don’t deal with enough. Of all the things to troll, political and otherwise, trolling sick people? Really? This is what people are doing with their spare time? It’s disgusting and disturbing. The only thing worse than children bullies is adult bullies. Adults who know better.
Chronically ill people deal with a lot. We have to go every single moment of every single day with numerous symptoms. I can barely get out of bed most days. I am never not in excruciating pain. But I have to try to live my life. Am I supposed to never have joy in my life anymore, never leave the house ever again because I’m sick? No, obviously not. What these people aren’t seeing is our recovery period after we do anything. Go shopping? Need to rest for a day. Cook a meal? Need to rest. Go to a concert? Need to rest for days, plural. Go on vacation? Need to rest for weeks. It’s not a joke, and name calling just makes us feel worse. It’s a form of bullying, and we need to stand up against it.
I got a response to my reports on Instagram– they deemed her comments didn’t go against their community guidelines. I’m sorry, what? How is this not bullying? I resubmitted it again, because there’s no way that can be right. But obviously nothing will be done, and her account will be in tact with no repercussions.
If we don’t stand up to these bullies and fight against them, they will continue to pollute the air with their hateful words. Whether they’re doing it on Reddit or our safe spaces, it’s unacceptable.
