What I wish people knew about my multiple sclerosis

I have MS. Finding this out literally floored me. I’m not sure there’s anything more life-changing than finding out you have a disability or chronic illness. And it can be super hard to know what to say someone who has one, when they’ve just found out and don’t really know what to say about it themselves. I’ve learnt so much since being diagnosed and am grateful for the friends who have stood by me throughout. They are always looking out for me. But I’ve lost some friends along the way too. It’s nobody’s fault but having a chronic illness makes you re-evaluate EVERYTHING. Here are some hints and tips of ways you can support your friend or loved one when they’re going through a tricky health time.

We still like having fun

Maybe your friend seems super sad and you don’t know how to help. This is okay and totally normal. If they have MS, or another chronic illness, they might be going through some major fatigue and not be able to do the things they would normally do. So you might need to think outside the box here. If you usually go out for dinner and drinks, maybe you could throw an impromptu cocktail party at their house, or host a Nicholas Sparks movie night. My friends threw me a beautiful garden soiree and when I was feeling better they took me out for games of pool. They were totally chill about everything, and them arranging fun things I could do really kept me going.

We might talk about my illness, but we also might not

Whether they want to talk or not, either of these options is totally fine. Just let them know you’re there if they want to chat, but if they’d rather just binge-watch Grey’s Anatomy and eat snacks, that’s cool too. Sometimes I want to talk about it, but sometimes I don’t. If you have a friend in the same position, being available for them is more than enough, and they’ll super appreciate it. Having people to talk to online got me through so many nights, but so did Netflix.

Try not to tell us what we “should” be doing

Your friend might ask for your advice. Finding out you have a long-term illness is one hell of a stressful thing, so they might be making some changes and difficult decisions. It’s okay to offer support, but try not to tell them what they should be doing. You might not agree with their life choices, but it’s not up to you. My best friends are the ones that stuck by me when life got cray cray and they never judged the choices I made. Instead, they let me express my feelings, and supported any decisions I made. I feel lucky to have those people in my life.

Don’t feel shy about researching the condition

Once your friend has got to grips with their illness, they won’t mind talking about it. I personally love telling my friends about all the crazy problems I’ve had or the hilarious things that have happened to me in and out of hospital. So there’s no need to feel like a stalker when you’re researching whatever condition they have. It might help you understand them better, and the way the illness affects them on a daily basis. They’ll truly appreciate your support in this way.

Don’t offer us your pity, even though you mean well

The worst thing is seeing pity in someone’s eyes or being told, “I’m so sorry for you.” Like everyone else, I’m just trying to get on with my life, and wouldn’t want anyone to feel sorry for me. Everybody has problems to deal with. MS is just a part of who I am now. It’s not going anywhere, and I’m alright with that.

We have good days and not-so-good ones

People with multiple sclerosis have good days and bad days. Bad days often involve staying in bed all day napping with Netflix. If your friend cancels plans, they might just be having a really crappy day. It’s definitely not personal, and on a good day, they will totally make it up to you.

Laughter always helps.

My best friends make fun of me all the time. Joking about my illness helps me to deal with it. The fact they create so much comedy out of my MS has been really healing for me. Obviously, gauge whether your friend enjoys this brand of sarcasm first. But regardless, laughing is therapy, so maybe send some Amy Schumer their way. Incidentally, Amy is really outspoken about MS because her Dad has it. She’s an all-round fab role model!

[Image via iStock]

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