Afternoon all! I hope you’re having a good Sunday. For this post, I sought the input of friends on one of my social media profiles. I asked if there were any particular things that they remember being told, asked etc with regards to their chronic illness(es). But I only wanted the bad, inappropriate, ignorant, hurtful and just plain silly remarks/stories. I want people out there to realise that, even though you think you’re helping someone, you can actually be damaging them mentally, or simply making yourself look ridiculous and ill-informed. My plan for this blog post is pretty straightforward; I’m going to take what my friends have told me, type it all up and hope that you’ll think the comments are just as bad as we all do. Note that this particular post will be about physical chronic health conditions. I’ll be doing a second post dealing with mental health at a later date. So, let’s get this rolling.
“I’ve been given lots of random advice! Told to exercise more, lose weight, eat healthier, get a part-time job etc etc” – Mark, M.E/CFS
“You’re just lazy. Have you tried not napping? You need to just push through and do normal activity and exercise. Aw, did you not sleep well last night? Why do you yawn so much, it’s really annoying. You were in bed for a week after the gym? It’s alright for some/you’re so lucky! I wish I could stay in bed” – Hannah, CFS
“You just need more sleep” – Alicia, Fibromyalgia and CFS
“My personal favourite comments from one person in particular…This is after being diagnosed with M.E/CFS for 16 years, a former manager asked if I was ‘allowed to work’ and if instead of a full-time career I should look into a part-time job, also that she was very ‘nervous’ that I have a medical condition as I’m a ‘time bomb’. She then continued that she had looked up and confirmed that apparently I was making half of my symptoms up because they weren’t on her Google search of most common symptoms. Another woman asked me how I’d be able to cope with being a mother as I’m always poorly and children are ‘hard work’. She said I wouldn’t possibly be able to have children as it’s unfair on them. I seem to believe she doesn’t think I have a partner or a supportive family who will provide any help necessary, if required” – Gemma, M.E/CFS
“I got told (when I was 17) to drink more and have more fun and I’d be alright” – Kayleigh, M.E/CFS
“You cannot have M.E, you’re not fat. Ah that’s shit! My sister has it too – she ate healthy and is now better. You’ll be fine, just need to rest. You should try going gluten-free (I’ve been gluten free for five years anyway). M.E? Isn’t that M.S? Get better soon! 22 years? Gosh I would have probably killed myself by now. Drink more water. Well at least it’s not cancer. Is this all you want for your life?” – Alice, M.E
“God never gives us more than we can handle. (Almost always said by someone who has had a relatively simple life, who mistakenly thinks it will be comforting to hear that their God keeps throwing this shit at me deliberately)” – Katie L, M.E, Ulcerative Colitis, Endometriosis
“Have you heard of The Secret? You’re sick because of what you’re putting out into the universe” – Kassady, Ehlers Danlos Syndrome, Gastroparesis, Dysautonomia
“Aren’t you too young for all that? And you are awful young to be on Warfarin, aren’t you?” – Katie B, Venous Sinus Thrombosis, Inter-Cranial Hypertension, Joint Hypermobility, Fibromyalgia, CFS
“After I was signed off sick, I was told that I wasn’t allowed to join my company for their work Christmas do because I ‘didn’t look ill’. Not because having ill people wasn’t their policy, but because I didn’t look ill. Explaining how my illness worked to someone else, they asked if I was just overthinking it. My DWP disability advisor once said to me ‘I think you can do more than that. I know someone with M.E who does x, y and z. You’re so young, don’t you at least WANT to work?'” – Kim S, M.E/CFS
“It’s because you drink Pepsi. I’m 82 and I can cook” – Sally, M.E/CFS, Fibromyalgia
“Migraines? I know how you feel. I get headaches too” – Raynor, Chronic Migraines
“Well you know how some people believe in M.E and others don’t? I’m one who doesn’t…(said to me by my own GP). Some people just can’t handle pain (said to me by a different GP). You just need to go out and get some fresh air. Once you lose weight, you’ll feel so much better” – Jess, M.E
“This life isn’t a dress rehearsal, you only get one of them. I don’t feel like you really want to get better” – Will, M.E, Fibromyalgia, IBS
“On frustration with multiple infections (not related) and inability to heal a normal earlobe piercing, my GP mocked me and said to the student GP sitting in ‘look at her cry. We manage without ear piercings’, thinking I was upset specifically about the piercings themselves. If he was more compassionate he would understand I was upset about my immune system. This was the last straw” – Elaine, M.E
“I’ve had people ask me how I am but not given me enough time to actually reply. They then say that I’m ‘looking SO well'” Kim M, M.E
“You’re too young to take all those medications. You should consider stopping them. Sorry how do you spell that? (from consultants when I tell them what I have). You’re tired? But you haven’t done anything?! I’ve also had some silly suggestions of things that might help me: lying in a darkened room with my feet up, rubbing my stomach while eating and having a bit of a hum to improve digestion” – Sammie, Ehlers Danlos Syndrome, Chronic Migraines, Fibromyalgia, Fatigue, Endometriosis
“You should try to make it to your appointments” Anthony, M.E
“Well you look fine to me. Yeah I know how you feel, I only got five hours sleep last night (Five? Five in a row? Damn I would think I’d died and gone to heaven!). God there’s always something wrong with you isn’t there? But you went out yesterday, obviously you were fine then so why can’t you today?” – Lucy, Dysautonomia, CRPS, CFS
“Oh M.E? Is that the one where you die?” Georgina, M.E
“You need to get out of your own head more. Try eating a few steaks and go for a run. I knew someone who had that and she’s not dead. You should go travelling, the sunshine will do you good. M.E is a very yin disease, you need to increase your yang” – Emma, M.E
“Can you still have sex?” – Deborah, M.E, Fibromyalgia
“Oh you’re just a fainter (this is what a paramedic genuinely said to me. I in fact have Vagus Nerve Epilepsy so I faint and seizure often)” – Layla, Vagus Nerve Epilepsy, M.E/CFS, Fibromyalgia
“There’s nothing wrong with you. You don’t smell. You’re not a vampire (My own GP said this)” – Danielle, M.E
“You haven’t really got an excuse unless you have cancer. You can still work with CFS. Sleeping in the day will make things worse. Have you read this article? If you build up exercise gradually you will get better. I reckon you could do at least 5 hours work a day. Why are you not going out?! , I think you have Agaraphobia. Have you thought about trying Yoga?” – Lizzie, M.E/CFS
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