The invisible disease. The silent struggle. Unlike other diseases, Multiple Sclerosis can largely present only internally, mainly as pain and fatigue. This, in turn, creates an entirely new kind of pain—the pain of being alone in suffering. When others don’t know what is wrong, or can’t fully understand what it is like to live with MS day in and day out, most living with the diagnosis often forgo speaking up, and instead, learn to cope quietly.
There is a lot about MS that is difficult for “healthy” people to understand, and one of the most frustrating things is that it can be really difficult to make plans in advance. You just never know how you are going to feel the following day, or even the following hour. One of the amazing contributors at MultipleSclerosis.net, Matt Allen G, wrote a wonderful article about his frustrations with being unable to make plans with friends in advance, and then some people not understanding why those plans may have to change at the last minute. Matt’s words really resonated with our community, and so many other people shared their thoughts and experiences with us. Here’s what our community had to say:
It’s emotionally draining
- My head tells me I can do it but my body won’t let me. For me this is the worst. I look around during my house and there is such that needs done but I just can’t. Depressing.
- I get so sad and discouraged when I see people posting pictures of everywhere they go and the fun they have…and I do well to get to the store once in a while.
- This is one of the hardest parts of staying in the family dynamic.
MS Doesn’t Care
- MS doesn’t care if your children need you to drive them here, there, and everywhere. MS doesn’t care if you got all dressed up and now you need a nap. I have gotten all dressed for church and then as my husband is backing up the van I ask him to stop as I need to go back in the house. Then I take a nap, fully dressed, too tired to undress.
- I have an international trip coming up, and the anxiety alone is killing me, but I figure you only live once. If I let this disease deter me from making plans and living my life as best I can while I still can I’ll always regret it. Tomorrow is not promised to anyone. You never know when there’ll be a “next time”.
- I never know when I am going to feel better; 10 minutes good, then it’s downhill.
- I always get trip insurance and have used it. It takes the pressure off. Make sure it covers pre- existing conditions as most don’t. I think it is Travel Guard. You have to purchase it within 2 weeks of booking a flight or trip. Really truly despise this part of living with the monster.
- My experience has been to make plans with the people who understand that I will do what I can. I go, do what I can and find happiness that I did what I could and had an experience that I will remember.
- I stopped making plans because I never know how I’ll feel. One day at a time.
- Fatigue and meltdowns make it so difficult to do things around the house. I’ve learned to do things as I can because pushing to finish anything isn’t possible for me.
No one understands
- This sums up my life perfectly. I HATE the unpredictability of this disease. Especially when “I look so good!” but my body’s numb. Or I can’t lift my leg. People just don’t understand what its like. No matter how much they try to empathize they’ll NEVER understand it. Like the phrase goes, “no one Gets MS Until they GET it”.
- This is something I wish all my family and friends understood.
- No one understands what MS is doing to you… You have to listen to your body. You will lose people because they just don’t understand… Keep positive and Never ever give up!!
- I wish my grown children would understand this.
I won’t let MS run my life
- It never stops me. I’m going to Thailand, jumped out of a plane, to work I drive a modified car, and I play wheelchair basketball for my local team.
- One day at a time is all you can do.
- It’s not about having a good day. It’s about having a good minute!
What about you? Do you struggle with planning? Do you find that friends and family don’t understand?