I have collated the top 10 most frustrating things I hear about my chronic illnesses. This post, to inform you of the types of things that may offend someone with a chronic illness and my responses to what has been said to me. Although, I have many illnesses the main physical ones are: Ehlers Danlos Syndrome, Mast Cell Activation Disorder, Interstitial Cystitis, Oral Food Allergy Syndrome, Irritable Bowel Syndrome, Chronic Bilateral Ankle Instability and Gastrointestinal Reflux disease.
1. “It has it benefits, you look really young”.
I think I would be healthy and look my age than appear younger. Ehlers Danlos Syndrome makes me look younger due to the faulty collagen, that makes my skin stretchy.
2. “You don’t look sick, just tired”.
Secondary effects of Ehlers Danlos Syndrome and Mast Cell Activation Disorder are: postural hypotension , chronic fatigue and insomnia. Having any chronic illness is super draining mentally and physically.
3. “You can’t be that sick , if you can go out on the weekend – surely?
It is never nice when people question your health. What people don’t see, is that I spend every weekday evening in pain in bed and Sundays sleeping. Due to a weak immune system, I get infections more frequently. When I struggle this infections I can spend 3-5 days off work sick at a time and I attend hospitals and doctor appointments each week. If the infections are out of control then I also need to stay in hospital. So, I really just go out once a week, and it’s usually a Saturday.
4. “Why do you wear mobility braces for attention? Your (name of bone) isn’t broken now”.
Although, my ankles aren’t broken now I have high ankle inversions. This means my ankles swing in and out on the joints when I walk, posing a high risk of fractures. I have broken both ankles multiple times making them weak.
Last year, I also tore all the ligaments in my right foot and damaged ones in my left – which never repaired themselves. I’ve had physio for years , but struggling with proximal muscle deterioration means it’s a slow process for my ankles to recover.
I am due to see orthotics again soon for another ankle braces assessment. Double ankle fusion surgery has been put on hold, because it has low success rates and I may be going on a 3 week inpatient programme.
So, I don’t wear mobility braces for attention. I wear them most the time because my ankles are dependent on them and because I don’t want to cause further damage.
5.”You are too young to be sick”.
Illness cant strike you at any age from the womb, midlife crisis or in your 90’s. What some people don’t realise is I won’t be better soon because my illnesses are chronic. Some days will be better than others, but two of my conditions Ehlers Danlos Syndrome and Interstitial Cystitis are incurable.
6. “I was just wondering because you have so many illnesses… are you the result of incest?”
Yep, this really has been asked more than once before. There is no evidence any of my illnesses are related to incest, not to mention I am not. After I was diagnosed with Ehlers Danlos Syndrome (which can’t skip a generation) both my parents were seen by rheumatologists. However, doctors determined they do not have Ehlers Danlos Syndrome and that my genes mutated.
7. “At least you don’t have cancer”.
I know like most, there are people worse off than me. However, Doctor Russel Johnston actually believes the pain from Ehlers Danlos Syndrome is worse than he has seen in Cancer patients. It makes me sad that some people think chronic illness is a competition. It is true my illnesses are not cancer – which is an awful disease. However, my conditions do still severely affect my abilities and quality of life.
8. “I think you are ill because you have a bad diet”.
I have heard this one, too many times. I have put on weight because of the medication I take now, not because of a bad diet. I do drink fizzy drinks and eat crisps but I also eat minimal gluten and on a lactose, seafood and nut free diet. My diet is also low histamine diet causing further restrictions, so I eat many fruit and vegetables daily.
You can’t know if someone has a healthy diet but just looking at their weight in isolation. Even when I was much thinner, I was probably more unhealthy because my body couldn’t absorb any vitamins of nutrients.
9. “I believe you are poorly, just not to the severity you make out”.
I was “best friends” with someone for a long time who thought this up until I cut off the friendship last year. She has tried to justify her belief by telling everyone else her opinion was correct. I am glad I am not friends with this person anymore, because I am not sure how someone who doesn’t have your condition(s) can know the severity you suffer. Especially, when they have never attend hospitals appoints with you.
10. “I think you overshare your health issues”.
This was actually said to me by someone else with a chronic illness. I view it as I am very open and honest on my blog and on social media now about my health. Although, I am not a doctor, like many I try to use it as a platform to share my stories, other peoples stories and educate people. If anyone thinks I overshare information, they have the choice not to follow me or social media or read my blog posts.
Have your Say
If there are frustrating things you have heard about your chronic illness – I would love to hear them below.
Sharing is Caring
I would love if you shared this post to raise awareness of invisible illnesses.
How to Support a Spoonie : 6 Dos and Dont’s
15 Things Medical Zebras have Learnt to Love about their Incurable Illness
Like what you see?
Follow me on my health journey on:
Discover Chronic Illness Awareness Gifts
Lets raise awareness of chronic illness together. View my handmade chronic illness awareness gifts at ChronicCreationsGB. A portion of the proceeds from each sale are donated to Ehlers Danlos U.K.
As much as you wish, live your dream and live your life irrespective of what anyone has to say. A lot of people who are not in your shoes will never know how you feel or understand your reasons.
So do yourself a favor and be you.
I do try to live my best life and do me 🙂 this post was more just to raise awareness. I think it is like that for a lot of things when the shoe isn’t on the other shoe xx
I feel like if people just considered whether their comment was kind before they made it, most of these things wouldn’t be said!
I feel like that about a lot of things , Holly x
Some people can be so disrespectful. Yes, your illness may not be as bad as others, and it may not be fully visible, but that doesn’t mean it’s not there.
Unfortunately , it is people of all ages … although I don’t think old people mean it as maliciously as some younger people in my experience. X
Oh my goodness. Number 6 has shocked me. How can people be so ignorant and rude?
I know , I still will never understand that one Elizabeth ! Xx
LikeLiked by 1 person
One of my relatives had an *interesting* opinion about the hereditary nature of hypermobile Ehlers-Danlos, which he freely shared with others: ‘His mother was a hypochondriac and she turned her son (me) into one as well.’
At least you don’t have, is a terrible thing to say. Actually all these are. People really just don’t understand and it’s crazy how they don’t seem to get it.
I think some people just don’t care Angela and some people are just ignorant unfortunately xx
Do people really say these? That is super rude of them! But, I think it would be nice to do a follow-up post to suggest things to talk to about some who has a chronic or invisible illness. It is sometimes hard to communicate with someone who has these conditions because you don’t want to be rude.
Yes , I only ever post honest things on my blog . Thank you for your suggestion. I have already created a post about 6 things that are better to say to people with a chronic illness … https://brainsandbodiesblog.com/2018/08/23/how-to-support-a-spoonie-6-dos-donts/. I completely get that, I think most chronically ill people would just like normal conversation most the time , books , movies etc xx
These statement make me so angry! I can’t believe how people can be so ignorant and insensitive to people’s suffering!
Bless you Nati , I hope this post will help reduce ignorance and insensitivity. I do create positive posts too 🙂 and will be posting how chronically ill people can live their best life soon xx
I was diagnosed with pots at 28 and I heard all the time “but you’re so young.” Ooof
I know Neely, he’s like only if you could see inside my body haha
I’m still shocked at how rude and willfully ignorant people can be. I hope that posts like this continue to educate people to be better.
Thank you x
I hate that ppl can be so ignorant at times. I know lost people don’t mean harm by making these statements but they’re truly so harming.
I know I feel like that too , but comments like these still upset me sometimes x
Unfortunately, I think that people are naturally “it’s not real if I can’t see it” types. I can definitely see how all of the above statements can be painful, I do think that they are rarely said maliciously.
Yes I agree, it is just sometimes I wish people researched illnesses before making comments on them xx
I do even have any type of illness and I’ve even heard people tell others they just look tired. That’s something no one should say to anyone lol
I hear that a lot too actually , that one might just be British culture . X
I love this compilation. I absolutely hate the “at least it’s not….” it downplays our disorder, as well as I don’t believe we should be comparing one persons pain to another.
Thank you Kayleigh, I completely agree we shouldn’t compare pain to someone else’s x
LikeLiked by 1 person
I hate being asked what’s wrong with me every other day because I wear splints. I never minded being asked at the beginning but when strangers keep coming over it upsets me x
I can understand that feeling , I was in ankle braces for a long time . I guess some people are curious to help and others are just nosey ! X