Monday 3rd December is “International Day of People with Disabilities”. In recognition, my employer asked for five people to share their story. One person a day will have their story featured on our local intranet in the Diversity and Inclusion pages.
Although I have previously written that I didn’t want my “This Is Me” story to be about my condition, I’m still up for raising awareness in any way that I can. So I found myself putting my name in the hat. I suggested I wrote something that would help people when it comes to supporting a friend or colleague who has an invisible condition. I know so many people have just not known what to say or do – before I had MS, I WAS that person.
Here’s what will be being shared on our company intranet at some point next week…
“Back in January of this year, I was diagnosed with relapsing-remitting MS (multiple sclerosis). It was a shock and bittersweet all at the same time. After years of having odd little bodily quirks, I could finally explain them all. Despite such a harsh diagnosis, my future prognosis isn’t bad. I have had the first of two rounds of a mild form of chemotherapy which reboots my immune system. All being well, it will stop my disability from progressing further. I’m due my second round in June next year. What this means is that whilst my condition won’t get worse, I still suffer with those quirks I mentioned. My mind goes blank mid-conversation sometimes. I get pain in my ankle, wrist and thigh when it’s cold. I have a numb tingling sensation in my legs and I’m often fatigued. Some days though, they’re non-existent. On others, it will be all I can think about.
Adjusting to being diagnosed with an invisible illness can be really tough. I certainly have bad days, but with the help of amazing family and friends it’s a whole lot easier. If you know someone with an invisible illness, you can help too. The problem is, sometimes it’s difficult to know what to say or do. So here are my top tips for supporting them!
1. Ask about it
If someone confides in you that they have a condition, they’re giving you a licence to talk about it. Thank them for being open and then ask them how it affects them. It means a lot when someone asks questions to understand the condition more, rather than just trying to avoid the subject. Find out from them what they need from you to help them day to day. Chances are they don’t want to be treated any differently, but there might be something that you can do to make their day easier.
2. Check in with them
I go totally off grid when I’m struggling to cope with my condition. I become withdrawn and you won’t hear from me for days. At some point, someone will notice that this is a bit out of character for me and check in. I’ll admit that I’ve not been ok and they’ll tell me that they are always there for me if I need to have a moan or sound off. Thing is, when you’re in that space, it doesn’t always occur to you to do that. So make sure you drop your friend a regular text to let them know you’re thinking of them.
3. Cut them some slack
It’s typical that someone with a chronic condition suffers with some degree of fatigue. That means that even the best laid plans can go wrong if they’re just too tired to function. Be forgiving if they’ve cancelled that night out for the third time in a row. In work, you might catch them yawning a lot. Go easy on them, it’s not personal.
4. Don’t make assumptions
Every day with a chronic condition is different. Some days you can take on the world and on others you can’t get out of bed. Then there are the days in between. Avoid making assumptions about what your friend, colleague or family member can do. Don’t stop letting them make their own choices and keep on inviting them to social occasions. Sometimes they will accept and other times they might politely decline. But they will always be grateful that you have continued to let them make their own choices.
5. You don’t have to find a solution
With all the best intention in the world, we want to solve people’s problems. But if the top doctors can’t find a cure for the condition, it’s unlikely that you’ll be able to provide a solution yourself. If they want you to give a solution, they’ll ask for your opinion.
Ultimately, the best think you can do is make sure that person feels loved and cared for. They need to still feel like a person, and sometimes the best way of doing that is doing absolutely nothing differently. Find out what you can do to support them but the key is to take their lead. Nobody with a chronic condition will manage day to day in the same way. The only way to find out, is to ask.”
MS Understood 