5 things you don’t have to be offended by if you live with chronic illness

Posts with titles like ’10 things not to say to someone with a chronic illness’ have been all over social media for a while now. I have read a few, and they are very relatable.

But something about them doesn’t sit quite right with me. While I get where they are coming from, the tone of these articles can be quite hostile.

I’ve realised that I too sometimes respond to comments people make with (internal) frustration and annoyance. “Don’t you realise how insensitive that comment is?!” I think to myself. Reflecting on this has challenged me to respond in a different way – the reality is that most people don’t know how it feels to have your condition, because they aren’t living it. And that’s not their fault.

If you’re already feeling physically and mentally ropey, it can be hard to take it with grace. But most comments are not made maliciously – they come from people just not knowing what it’s like to have a long term condition. I do believe there is a need to be sensitive in what you say to someone with a long term illness. But equally, the person suffering has a responsibility to take down their defences and hear what the person might really mean. And to let people have an honest glimpse of what life is really like for you.

Here are my ‘Top five phrases that have really wound me up at times’ – and why they don’t anymore!

1. “You’re looking well!”
   A friend pulled this one on me the other day, when I was describing how exhausted I was. At first I thought, “Gah, haven’t you been listening?! Do you think I’m making this up?” But then I considered that their intention might be to encourage me. I realised I could choose to take it as a dismissal – or as a compliment. And even if they didn’t believe I felt as unwell as I was saying, there is no benefit in taking offence.
2. “Have you tried eating only fermented food/drinking vinegar/eating houseplants?”
   When I was first diagnosed with RA, this drove me nuts. It felt like people who suggested this thought a ‘quick fix’ would get rid of the complex and painful symptoms I was experiencing. It made me feel like they thought it was ‘minor’. It was when my mum bought me some apple cider vinegar to drink (waaah, vile!) that I saw it differently. She was so desperate to see me well, that as far as she was concerned, anything that might make even a small difference was worth a try. I saw the love she had for me and it melted away the judgement I had felt about people’s ignorance. Now I see that these suggestions come from people wanting to help. It’s also a chance to educate people and talk about what has really turned my life around – the medications I take that mean I can function pretty normally. (Of course, there is lots of research about the link between what we eat and autoimmune conditions. Some people find particular diets help with their symptoms.)
3. “But you’re feeling better now right?”
   I often get this after someone has asked how I am. I might describe a bad week, then they look at me and come out with this statement. When I’m already feeling a bit rubbish, it can make me feel like they think I’m just moping or making a fuss. But as with the food fad suggestions, I know I have a choice to believe this optimism comes from a loved one’s desire for me to be well. Which is what I want too! I do find it hard to be honest with my response to this one – if I say “No, actually, I’m still pretty rough,” I feel like a disappointment. Or worry they will think I am seeking attention. But ultimately, honesty is the best policy.
4. “Ah, yeah, I’ve got a sore hip too.”
   It can be very annoying when someone makes a direct comparison with your situation. But I think there is a danger of slipping into a ‘superiority complex’ when you have a long-term condition. It’s not a competition, and someone else’s pain or discomfort is just as real and valid as my own. Maybe the other person is just trying to find a way to relate. I have some friends who struggle to tell me when they are unwell as they say, “It’s nothing compared to what you have.” But that’s so wrong and untrue. I hope I don’t give off the impression that I don’t want to know. Because I really do.
5. “Should you really be eating that?”
   This one’s for all the diabetics out there! It brings out my worst sarcastic self when people ask this one. “Ah, I’m so glad your here – I would have eaten that by mistake if you hadn’t questioned it. It’s not like I think about what and how much I’m eating ALL THE TIME!” But again, the motivation here is concern. It must take a lot to challenge what a friend is eating – I wouldn’t find it easy. So I’ve learned over the years to pack the sarcasm away and give a helpful response. It’s a chance to educate people about what people with diabetes can eat now, and how much has changed over the last couple of decades. And much as I hate to admit it, sometimes they are right to challenge me. As great as dose adjustment is, sometimes, eating a huuuge slice of cake really ain’t gonna help the old blood sugars.

So there’s my top five! Any to add?

For me, the golden rule is remembering that most people have my best interests at heart. And if they don’t, well, who cares?