So I’ve been off the raidar for a bit recently due to the negativity that sometimes comes along with social media, but I’m back with a new look blog and new look facts!
Living with a chronic illness is tough. Daily life can be a struggle and the stigma and lack of understanding that often comes with disability can add to the challenge. Not only can it be difficult for the ill person, but often other people don’t know how to act or what to say to someone who is living with a chronic illness so I created this list of what not to say!
What not to say to someone with a chronic illness.
- But you don’t look sick.
Not everyone who is sick has physical signs. Many of us can look completely healthy on the outside but if you could see inside it would be a different story. Many of us don’t want to look ill so we do what we can to look as “normal” as possible, like putting on make up. Just because you can’t see something it doesn’t mean it isn’t there.
- Why haven’t they made you better yet?
If we could be made better then I think we would be better by now. A lot of us have incurable conditions and treatment is very limited so having to try and explain why we aren’t better can be very frustrating and bring up all sorts of emotions that we have this for life.
- When are you back at work?
Have one good day and then everyone is like “so when are you going back to work?” I would love to go back to work but please do find an employer who is willing to accommodate my multiple hospital appointments per week, who understands that today I just can’t physically get out of bed so I won’t be in, who doesn’t mind if I pass out and stop breathing due to extreme pain levels so I don’t get my work load done. There are good days and bad days but at the moment there are more bad days than good so it wouldn’t be fair for me or my employer for me to be back at work. Being sick is a full time job, 24hours a day, 7 days a week, 365 days a year.
- You’re too young to be sick.
Hang on let me just get my ID out and tell my multiple conditions that I’m too young
- It must be great sitting and doing nothing all day.
Contrary to popular belief it’s not fun just sitting or lying in bed all day in lots of pain, I would much rather be at work and doing something productive. If I have a good day it doesn’t mean I’m cured and I can go back to work tomorrow.
- It’s all in your head.
For someone with a chronic illness the most powerful words someone can say to you is “I believe you”. It isn’t all in our head.
- Have you tried…
I appreciate you are trying to find a solution and I will do whatever I can to help myself but please remember that everyone is different and what works for one person may not work for another. If a simple dietary change could cure me I think I would have found it by now.
- At least you don’t have…
Everyone is fighting a battle you know nothing about. Yes there are people worse off than me and I am exremely lucky but there are also people better off than me. I don’t want people feeling sorry for me, I just want understanding.
“Saying someone can’t be sad because someone else may have it worse, is like saying that someone can’t be happy because someone else may have it better.” – Unknown
I hope that this little piece helps.
Love & Hugs, Charlie xx
Last night I was taken to hospital by ambulance after passing out and being unresponsive due to severe pain levels. Unfortunately once again I was faced with people who had never heard of Ehlers-Danlos Syndrome and didn’t know how to treat me. I was pricked with needles numerous times, even after saying I have a connective tissue disorder and have fragile veins and usually need a more permanent line for IV’s, I was left for hours without pain relief as they didn’t know what to give me after I had a cardiac arrest in November and unfortunately there was not a lot that could be done. I do not blame the medics as they were very busy and the staff were all very kind and wanting to help, but this shows how we need to raise more awareness of Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome and all the other “rare” and invisible conditions out there. We need more specialists locally, not just in London. We need a clear care plan for when things like this do happen. We need help. We need AWARENESS!
I may not look sick on the outside but on the inside there is a different story so I decided to take a picture where I look “well” and write some of the conditions and symptoms I have that are invisible.
Together we can make a difference ♥