Wednesday, 6 May 2015

What not to say to people with chronic illnesses, and what they wish they could say in response

Not only is May M.E. awareness month, but it is also the month for many other chronic illnesses.  So when better to share a blog post on chronic illnesses.  Since taking an active part in the on line chronic illness community, I have learnt that there are a lot of things us sufferers of chronic illnesses have in common.  Here are some of my top statements/scenarios that really get up the noses of people with chronic illnesses, and my ideal response if I was feeling brave and it was considered socially acceptable.

I'm sure that when you start your new job (course or any other life change) you will be much better

By saying this to me you are indicating that you think my chronic condition is clearly psychological. This is not a phase, it's not depression or even hysteria.  It is a real medical condition that unfortunately won't go away for very long time, if ever.  No matter how many life changes I make it will be one of the few things that is constant. 

I know how you feel… I get tired too

I don't know who started the lie that the only symptom of my chronic condition is fatigue, unfortunately it is not, most chronic illnesses include fatigue as one of their many debilitating symptoms.  Now when we say fatigue and you hear "tiredness" there is a problem.  The exhaustion that comes with a chronic illness is nothing like feeling sleepy, it's lethargic and is very achy.

Do you have an official diagnosed allergy?  There is no medical evidence for food intolerances - When the person has given dietary requirements for an event

I do not have an "official" diagnosis, but that doesn't mean that if I eat certain foods they won't make me feel severely unwell.  Every illness and it's treatment were undiscovered at one point.  Just because the doctors don't formally recognise that avoiding certain foods can alleviate some of my symptoms does not mean that the benefits of doing so are all in my head.  There is no cure or long term treatment for my illness, so for now please respect my choice to eat what I want, as its one of the few things that helps me at the moment.  Also, pleas don't uninvite me to your event just because I am difficult to cater for (yes this actually happens)!  I am very sorry for the inconvenience, and am very aware that it's a pain!

It’s so good to see that you are better now!  - When they attend one function looking healthy

Yes I may be out of the house for a few hours and look and sound relatively normal, however this does not mean that I am cured!  My chronic illness means that I will be unwell for ever, or at least several years.  Please stop asking or assuming that I am better.  Note events x,y and z that I was not able to go to due to illness.  I had to save up my energy for weeks/moths before being able to come to this, and afterwards I will experience payback where my symptoms are worse than normal.  I feel dreadful on the inside, even though I may appear healthy, unfortunately you never get a break from chronic illness. Reminding me of my chronic illness, one one of the few days that I am trying to escape from it is distasteful.  

Have you tried this (insert bogus remedy) its only (£600 for 4 sessions) some people get cured from it

I know that this won't work for me (even though I haven't tried it) because if there was a cure for my condition everyone would know about it by now.  I have tried several alternative therapies, and all that happened was that my bank balance decreased.  Once there is an effective treatment for my condition all of the con artists will go away - you'll see.  I know that you are just trying to help though, so I appreciate the sentiment!

At least you don't have (insert random illness) it could be so much worse… 

There are diseases out there that are more deadly than my own, I am grateful that I don't have one of those.  But my disease has no treatment please acknowledge the reality of that.  I can tell that you are trying to be positive, I like positivity.  However this is sweeping things under the rug, which makes me feel belittled and like I'm not being taken seriously.  I don't think that is is fair to pit illnesses up against each other.  Everyone's individual suffering is unique and cannot be compared, nor does it achieve anything by trying to do so!

One day in the future when we have children (we are married or we are old)...

I like to talk about these things form time to time, but please don't talk about it too much.  They may actually be impossible for people with chronic illnesses.  You have to understand that this is a sensitive subject, and it's probably best not to talk about it unless you know that it’s the right time.  Each chronic illness is different, and affects individuals differently.  How someone is feeling about their future will change throughout the course of their illness and often form day to day, it is very difficult to know how someone else feels about these things.

I hope you feel better soon - After the person has had to cancel going to an event

Thank you for reminding me that I will never recover from this illness.  If I tell you that I'm not going to something and give a non-specific health reason, please assume that it is due to my health problems.  If you know me then you should be aware how much my chronic illness dominates my life.  My illness fluctuates, which means that some days are better than others, I may have been well enough to go to an event recently, but that doesn't mean that I have recovered.  What you have said implies that I can get better from the illness, unfortunately that is not possible.

I know your thinking, well what can I say to people with chronic illnesses?  I have written a blog post about what to say, I'll link it here when it is finished.


  1. This is such a brilliant post Jenny and I can really relate to it, my most hated comment is 'I hope you feel better soon' or 'I hope you're ok', I find it so infuriating because quite clearly we aren't and it's so hard trying to accept that we probably won't ever be ok again. I also hate it when people ask you if you've tried so and so, there's only so many times I can smile and be like hmm maybe I'll give that a try when I know full well it won't work!
    The patience that's required with chronic illness is often just as exhausting and challenging to me as the actual illness itself if you know what I mean!
    Love Holly x

  2. People rarely get the "I hope you feel better soon" one, it's just challenging when you know that you won't get better, and when it comes from someone who you've know for a long time - it's as if they have forgotten that we are chronically ill. I find myself saying similar things, but hopefully with a different emphasis, so that they know I don't think it's a temporary problem, and that I hope they have an easier time soon! Yep you are right, it can really test our patience! Thank you for your kind words! I hope that your day has been as good as possible xx


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