This is a list of things not to say to people with a chronic illness.
Why? Here are a few reasons!
- We see our doctors very frequently, I for example speak to my doctor every 2 to 4 weeks (yes that frequent!), and they know better than you.
- Some of us have had this for decades and will never get any better! We have tried many things over the years and what you are suggesting we try, we have already probably tried before or it is just not something that would help.
- It is incredibly rude and also ableist as you are suggesting you know better than us by suggesting things to try to try to fix us or reasons we are chronically ill. We know our health better than you as do our doctors.
- People say these things to us all the time so we are constantly having to repeat ourselves as to why it won’t help and what is wrong with us, when we shouldn’t have to but you make us have to.
Here is the list of things not to say to a chronically ill person:
1. “Have you tried?”
My all-time least favourite and I hate hearing it!
The answer is usually yes I have tried it and it doesn’t work as I have had pain almost 20 years and tried everything going, or that is not something I can physically do or that is not something that will help; but either way, I end up having to explain and justify myself over and over when I never asked for any advice from a healthy able-bodied person to start with.
Quite simply we do not want this unsolicited advice from anyone let alone from people that have not experienced the same condition.
Here are some of the things I have had suggested to me by random people:
- hot baths to fix chronic pain
- yoga & walking (when I can barely walk and can’t stand long)
- changing diet
- varieties of over the counter painkillers for minor pain when I am on Fentanyl and still have pain as my pain is so incredibly severe
- One person suggested a buccal anti-nausea pill I have already tried, and when I said I still vomited them up and they didn’t work they told me it is impossible to vomit them up as they stick to your lip (basically calling me a liar), even though it is me that experienced it about 20 times and saw them floating in the toilet when I had been sick but of course, they know better!
- CBD and countless other things.
2. “I know how you feel or I am tired too”
You have no idea how I feel. You are healthy and never experienced the illnesses I have.
My chronic pain is so bad I can barely move and hurt so much it is horrific and it affects every second of my life. You have no idea what that feels like.
When you have chronic fatigue the thing that you want to hear from someone that does not have chronic fatigue, is that they are tired too.
Chronic fatigue is not “tired”, it is constant severe fatigue where the smallest thing causes us to be severely exhausted. The fatigue is constant and no amount of sleep or rest helps.
I have severe chronic fatigue and have to sleep 10-11 hours minimum and still feel exhausted just getting out of bed.
I never feel awake and refreshed, and any less sleep than that and I feel dreadful. I constantly feel like I have run a marathon and have no energy whatsoever.
Chronic fatigue is not just tired and my chronic pain is not just an ache, so comparing your mild tiredness or aches and pains to someone with chronic fatigue and chronic pain is rude and selfish!
3. “I hope you feel better soon” or “are you feeling any better”
These are chronic illnesses, they will never go away and I will never feel or get better! I know that you mean well saying but you are not making me feel better and it can make me feel worse as I know that can’t happen. I have bad days and horrific days, I never feel good.
4. “It could be worse”
I can barely walk, can’t stand long, never get out of the house and in severe pain plus severely exhausted 24/7.
Yes, it could be worse but by you saying that to me, you make me feel much worse as you aren’t taking into consideration how awful I have it and how horrific I feel every day.
It is not a competition as to who has it worse and you won’t make me feel any better by saying this.
5. “Are you still ill?”
Chronic means just that. Permanent or long term conditions.
I will never get better, I will only get worse. My pain will get worse and one day I probably won’t be able to walk. Some days my pain is horrific, other days are severe. I personally don’t have good days, just bad and worse.
Yes I am still ill, yes I am still in severe pain, yes I am still severely exhausted. These are chronic conditions! Asking over and over if I am better or things like that is just pointless and we honestly don’t want to hear it as we won’t get better.
6. “You should get out more”
I would LOVE to get out more! I am sure all chronically ill people would but it is not that easy. Sadly my health plus lack of money due to being unable to work won’t allow that.
I can’t stand or walk far and get severely exhausted by the smallest things and I even wake up fatigued. My mood is so low and I am so tired all the time that I can barely be bothered getting out of bed.
The medications I am on make me even more tired so I can barely be bothered doing anything as much I would love to be out doing something else, it is not that easy.
I personally only get a tiny amount of money a month which isn’t enough for anyone to live off. I can’t afford a car and being pretty rural the bus service is once an hour and very unreliable. I can’t stand waiting at the bus stop and if I got to the nearest town, there isn’t much there so would have to walk around which I can’t do anyway. I am literally stuck in my house permanently. If I had a lot of money I am sure I could get out more as I could get a car, electric wheelchair, carer etc. The list goes on. Sadly that won’t ever happen.