The Mighty Logo

Why I Posted a Selfie During the Multiple Sclerosis Week of Awareness

The most helpful emails in health
Browse our free newsletters

Recently I took part in the National Multiple Sclerosis Society’s #KissGoodbyeToMS campaign for multiple sclerosis (MS) awareness week.

I was off sick from work with a cold, and because I was struggling with my chronic MS fatigue. I desperately wanted to take part in this awareness campaign. As soon as I was feeling ever so slightly better, I put on some lipstick and took a photo.

Unfortunately, this photo demonstrates one of the most frustrating things about having MS – it’s an invisible illness. Anyone looking at the photo wouldn’t think that I had shooting pains in my left hand and was so overwhelmingly fatigued that I was on the verge of tears. I look “fine,” so I do understand why people can be skeptical and maybe don’t believe I wasn’t well. It’s a shame that unless I’m sneezing or coughing, I feel like a fraud and people won’t understand that I’m not well.

MS affects me every minute of every single day. I still work full-time, but every day is a struggle. A struggle, however, that I will continue to fight for the rest of my life. Luckily I have great friends, family, and a fantastic husband. I’m well supported by those around me. This gives me the strength I need to fight this disease.

Woman holding her hand up to the camera, with a lipstck kiss on her hand.

My life does somewhat revolve around my favorite place in the world – my bed. But that’s OK! I’ve learned to be happy and to restrict my social activities in order to not tire myself out even more. Every Sunday I snuggle down with my weekly planner and write up my plans for the week ahead. This helps me see at a glance what I have going on and if I should cancel a couple of things, or if I should book in some more rest time.

I’ve learned to prioritize what makes me happy in life and to focus on those activities. I try not to put pressure on myself to see all my friends all the time and do all the activities. I also try and avoid having any plans on a Sunday as this time is so precious to me. I sort of treat it like a healing day to rest and recover from the past week, getting ready for the new week ahead.

This now makes me sound like I never do anything apart from going to work then going to bed. This isn’t true. Well, some weeks that can be true Monday to Friday, but I do plan my time out to make sure I see friends, even if it’s just for a Saturday afternoon coffee. My husband and I also love our holidays, so we plan and prepare for those throughout the year. He is so considerate about my MS so we make sure we take each day as it comes and balance our holidays with exploring and having fun but also enjoying a bit of rest and relaxation.

I feel like a broken record, but being permanently sleepy is the most tiring thing in the world.

Together we will find a cure for MS. With so many horrible things happening in the world right now, let’s try and focus on the positives and do everything we can to get some happy life changing stories in the news!

Follow this journey here.

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: Bel_ka

Originally published: May 29, 2017
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home