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.
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