to say or not to say

Over the past few year, I have experienced a lot and changed how I look at certain situations. The main focus of this blog is to highlight people’s attitude towards those living life with a chronic and invisible illnesses.

People will often say things and, to them it seems like the right thing to say, but to the person with the chronic illness it may be taken in a completely different way. Of course, if you have never experienced something yourself, how are you supposed to know the right thing to say? No one is blaming you for this but again, this is why it is so important to learn what is right to say, what might be seen as wrong to say, and most importantly what could be said better.

So, from the perspective of someone who lives with a chronic illness, here are 10 things I think you should probably try and avoid saying to a person with a chronic or invisible illness.

1. Avoid saying “you don’t look ill.”
I guess this is intended as a compliment and it is a compliment – to a point. But on the other hand, these words actually highlight our biggest insecurity which is because our illness is invisible, we are constantly worried that people do not believe we are really ill. It’s difficult not to feel like this when we have also experienced doctors and nurses who question our diagnosis or symptoms. When we hear ‘but, you don’t look ill,’ we hear speculation instead of support. Instead, perhaps try saying “you look great, but how are you feeling?” Or maybe “are you feeling as good as you look?” This way, you can express that they look good or better than the last time you saw them, but it also acknowledges that you understand there may be invisible symptoms hiding beneath the surface. 

This is me at the hospital having my Ocrevus infusion.

To the outside world I look absolutely fine, except the fact I’m hooked up to my treatment via an IV.

2. Avoid saying “I know how you feel.”
You can pretty much only say this if you suffer from the same illness as us, but even then, chronic illnesses affect people so differently. Although there is some comfort in knowing we are not alone, hearing “I know how you feel” from a healthy person with an unrelated issue is not helpful. Instead maybe try saying “that sounds difficult, can you teach me about your illness or help me understand more.” And, if you’re not sure, it’s always a good idea to ask questions or take some time to do some research.

3. Avoid saying “if you need anything let me know.”
Don’t get me wrong, this is a really lovely gesture and can sometimes be the right thing to say. However, the question is sometimes too generic and when asked such a question, we may not want to burden you and we are less likely to let you know that we need something. Even if we want to say yes, we won’t know what to ask you for and we won’t want to put you out. Instead say “I’m going to (insert specific shop). Do you need anything?” or “I’m making (insert meal) tonight, do you want me to make some for you too?” The truth is, sometimes we do need help but we may not even know how you can help. So, by telling us where you are going or what you are doing it will help us to feel like we’re not inconveniencing you. It’s still hard for us to ask for something, but if you make a specific offer and we need help, we will probably take you up on it.

5. Avoid saying “at least its not (insert other illness)”
Basically, just don’t compare illnesses. We all have or will have experienced our own personal problems, and at the time, they are each tragic in their own right. Telling us we should be thankful because we are theoretically less sick than someone with something worse is like saying we shouldn’t be happy because someone else is happier. Of course, things could always be worse, but so what? Just because something could be worse doesn’t mean what we’re going through now isn’t challenging. Instead simply say something like “I don’t know what it’s like for you, but I’m here for you.”

6. Avoid saying “you’ll be ok, you’ll be back to normal in no time.”
As difficult as this is to admit, our illness is our new normal. There is no getting back to ‘normal’ because our illnesses have changed us. We can’t beat this illness, which is why it’s called chronic. Simply, instead say “we’ve got this” or “we will get through this together.” This way you are letting us know we are strong, and it indicates you are going to help us through this journey.

I remember an ex partner used to question me for going out drinking and trying to enjoy myself. I was 21 at University at the time…

4. Avoid saying “should you be doing that?”
Just because we have an illness, it does not mean that we can’t make our own decisions about what we can and can’t do. Do not question why we are or aren’t doing something. Don’t blurt out the same cliché advice that we have already heard a million times. Yes we know we should probably get more sleep, eat healthier, exercise more, change our diet, drink less, rest more – but maybe we’re just enjoying ourselves. All of it is our choice. If you want to help someone with a chronic condition, instead you can support them by doing research and talking to them about it, rather than judgmentally picking up on things that you think they should or should not be doing.

7. Avoid saying “my aunties best friends sisters cousin had the same illness you have.”
I knew nothing about MS until I was diagnosed with it. Now, it seems everywhere I go someone tells me they know so-and-so who has or had MS. In some ways, for people living with a chronic illness, it’s comforting to know we’re not the only one and it’s great to hear other stories. But the problem with it is, we either get to hear that the individual is all better, or we get to hear the person is bedridden or in a wheelchair, or sometimes even dead! Either way, this is not necessarily comforting to us unless you actually have first hand experience and can give us advice or hope. So, ideally just avoid saying this.

8. Avoid saying “I already told you that, why don’t you ever remember anything?”
Chronic illnesses often make us forgetful. Our cognitive functions – memory, ability to process information, remember dates, names and locations and respond effectively to you may be compromised. So when it seems like we aren’t listening to you or we don’t remember what you told us last week, it may not be because we aren’t interested, we just simply sometimes can’t remember. If you say things like, “don’t you remember?” and/or act annoyed when we can’t remember things, we will feel stupid.  Sure, it can be annoying but try to make things as easy as possible for us by not telling them detailed stories, or expecting us to remember specific things.

9. Avoid saying “I’m so tired, I wish I could sleep in like you do!”
I will admit, sometimes it’s nice to have a reason to stay in bed that little bit longer, but I don’t do this just for fun – if I don’t sleep enough, I’m susceptible to having a relapse. Ok sure, most people are not getting enough sleep and rest. But there is a massive difference between being a bit tired and being fatigued. We’re not saying you aren’t tired. Everyone gets tired. But our kind of tired is not the same as a healthy person’s kind of tired.

10. Avoid saying “oh, you’re cancelling again?”
We never want to cancel. When we wake up feeling rubbish and realise we aren’t physically able to keep a commitment, we are disappointed and frustrated. We feel guilty for canceling yet another plan and we worry our friends will eventually stop asking us to do things because we are seen as unreliable. Instead say “don’t feel bad if you don’t feel up to it, let me know when you want to reschedule.”

It’s important to express that you know it’s not our fault if we cancel plans. We will still feel sad that we have to cancel, but when someone shows understanding, there is less pressure to push ourselves when we should be resting.

It’s not always easy to know what to say, and we understand that. We understand that when people say the above things to us, they probably don’t even know that they have said the wrong thing or that there may have been a better way of saying it. We understand that when you do say the above things to someone with a chronic illness, a lot of the time you are just trying to help us. But, it is important to be aware of how some of the above sentences could be perceived.

However, it’s also important to remember that different people will have different opinions about what people should and should not say. Just because I think you should avoid saying the above, doesn’t mean every person with a chronic illness will agree with me. I think the best thing you can do if you’re unsure is to ask. Speak to the person and find out about their condition, how you can support them and if there’s anything that they would rather you avoid saying.

However, I hope that these 10 things will help you relate better to the people in your life with chronic illnesses. Sometimes, it’s just a case of taking a second to think about what you are going to say or how you are going to say it.

Thanks for reading,
Amy x