Living with primary progressive multiple sclerosis (PPMS) for the past several years has provided me with insights about the condition that I’d never have understood if I had not lived with it myself. I dislike using the word “journey” because it sounds too precious. The ups and downs of this disease partly define my life — they aren’t simply one journey that I’m traveling. However, I have certainly faced my share of challenges since my formal diagnosis in 2018. Hopefully, the following three tips can help someone who just found out that they have PPMS.
I feel like I buried my head in the sand to some degree when I was initially diagnosed with PPMS. I started advocating for others and telling everyone about my diagnosis rather than spending time understanding how the condition would affect me.
I would tell other people to take time for themselves and to not feel pressure to tell others what’s going on with their health. You will feel an incredible amount of emotions. You will want to scream, you will want to cry, you will want to laugh, and all the rest of it, and you should just ride it out and let it go, because it's the only way you’re going to get through it.
When I was diagnosed, I shared it with just about everyone. In hindsight, I would have kept that to a select few people, because I realized really, really quickly who was going to be in my corner and who wasn’t.
If you want to share information about your diagnosis, share it. If you don’t, you shouldn’t feel any pressure to, because people just react differently to it.
If you want help, ask for it — someone said that to me really early on, but I didn’t always take that advice to heart. However, when I was moving from a much bigger house into a bungalow, I got myself into such a state, boxing up things myself. Ultimately, I put a post on Facebook that said, "It’s not often I ask for help. Will somebody help me?"
And the next day, there were people bringing boxes, filling boxes, taking stuff to the van — it was amazing. It was absolutely incredible, and even when I moved, it was a friend with a van who moved me. And he just said, “It doesn’t matter how many times we have to go backward and forward, we'll just do it.”
If you’re having a bad day, don’t feel like you need to be “on” all the time. I always say to those around me, “If you don’t see me, it’s because I’m having a bad day.” During those times, if I need anything, I will come and ask for it. If they don't see me for a couple of days, there’s usually a friend tapping on the window or texting to ask if I need anything, which is so nice.
My Perspective articles discuss multiple sclerosis from a specific point of view. My Perspective articles don’t reflect the opinions of MyMSTeam staff, medical experts, partners, advertisers, or sponsors. MyMSTeam content isn’t intended as a substitute for professional medical advice, diagnosis, or treatment.