If I had a dollar for every time I’ve had to stop myself from eye-rolling, I'd probably be off ‘living the dream’ on an island somewhere. Unfortunately, I would have made a vast percentage of that fortune off the back of stupid shit people have said to me in conversations about my Chronic Illness.

When you get diagnosed with a Chronic Illness, life demands two things. One, that you make A LOT of changes to how you live and two, changes to how you live are made for you whether you make them or not. When I was first diagnosed I fought tooth and nail against both of those demands, that is of course, until my doctor informed me that if I carried on the way I was, I would be in a wheelchair in a matter of years.

This was, what you might call, really fucking motivating. As time went on, I made those changes and stepped into my power as a Chronic Illness Advocate. Many of these changes altered my life dramatically, and as time went on, I began to reflect on the many reasons I had battled so hard against these changes. I realised that among others, one of those reasons was steeped in shame. I was ashamed of how others would perceive me as a person with a disability.

To their credit, many people that I am blessed to surround myself with proved me wrong. That being said, many others responded in ways that not only matched what I had been expecting, but exceeded it.

So in an effort to give perspective, spread knowledge and perhaps stop somebody else from the repeated pain of misguided hurtful comments, here is a list of shit things people say (that they definitely shouldn’t) to someone with a Chronic Illness.

🙄🙄 Any comment AT ALL about a change to physical appearance

Medication side effects like weight gain, looking tired AF or in my case, shaving your head to reduce the pain I experience from an extreme pain response to touch (a symptom of Trigeminal Neuralgia) are just some examples of potential changes to appearance from Chronic Illness. This may shock you, but we are already insecure about them and pointing them out is shattering for someone's self-esteem.

🙄🙄 “I get really tired sometimes too”

The unfortunate truth is that in our modern reality, though not having children is more accepted than in the past, it is still a choice that needs a “reasonable” justification. It seems to be the case that women face a biased jury of professional acquaintances, friends, family members and other women, set to decide if their reasons for not having children are deemed “good enough” for them to be allowed to make that decision.

🙄🙄 “But you don’t look sick”

Ah the perils of invisible illness. This is so hurtful and though sometimes it’s meant as a compliment, it fills us with self-doubt and can even make us feel as though you are thinking we are dishonest.

🙄🙄 “Oh yeah, I did the MS Readathon when i was in school”

As a kid I was a massive book worm. I used to stay up late at night, reading under the covers with a torch. I lived to read and when the MS Readathon would roll around I’d be hassling my neighbours and family to sponsor me to read as many books as possible to raise money for the MS Foundation, largely for the prizes and not really knowing what MS was. Turns out the Readthon is still a thing and kids are doing it for the same reason I did, which is awesome and helpful, but more awareness and humanising the illness should also happen in schools I think.

🙄🙄 “I’m sorry to hear that”

Again said with good intentions but honestly it is meant as a pity. We don’t want pity. Nobody wants pity. It kind of feels like a cookie cutter response you feel obligated to offer and mostly shows your discomfort with being around us. Which to be honest, really feels like shit.

🙄🙄 “Have you tried changing your diet?”

Listen, I have a chronic illness and no amount of kale is going to change that. Chances are we have tried everything and anything you can imagine and this comes off as belittling and patronising.

🙄🙄 “Have you tried taking these vitamins?”

Read “have you tried changing your diet” again. Also we take a tonne of pills and supplements, more than the average person so chances are we’re already filling our immune systems to the brim with all the things!

😔😔 Not inviting us to things anymore

This isn’t an eye roll because this just makes us feel miserable. A Chronic Illness often means we are far less likely to attend events. This doesn't mean we don't want to be invited and we’ll try our darndest to be there, but sometimes our bodies say no. Please don’t stop asking us, because when you do it sucks and it really hurts bad.

So you may be thinking, well WTF do i say then?!

So I thought I’d hook you up with some good shit to say to someone with a chronic Illness too.

🤗🤗 “Wow that’s really shit, I imagine it makes you really mad”

🤗🤗 “How does that affect you?”

🤗🤗 “Is there anything I can do to help?”

🤗🤗 “I know everyones MS is different, how does it show up in your life?”

The reality is, everyone's experience of Chronic Illness is different. The best way to talk about someone's experience with them is to ask them about it. Ask them what, if anything, they feel comfortable saying.

If you want to find out more about life with a chronic illness, jump over to my Instagram and message me to connect!