The #1 Thing You Can Do for Someone with MS or Chronic Illness
In my long tenure as someone dealing with multiple sclerosis, I have many times found myself talking to the newly diagnosed. Along with that, I’ve also found myself talking to friends, family, and significant others of those who have contracted this disease. They often ask me, what’s the best thing I can I do to help them? My answer is simple: learn about their disease.
I’m sure there is a massive helpless feeling that comes with having someone you care about being struck with a horrible, incurable disease. I can certainly understand, as my grandfather also had multiple sclerosis when I was growing up. It wasn’t until I acquired the disease myself and lived with it for a while that I realized what would really help the most: learning about the disease, researching it. Not relying on anecdotal evidence you may have from others is the true way to help us.
MS is misunderstood
Multiple sclerosis, like many chronic illnesses, is very misunderstood. It seems that everyone knows a second aunt on their mother’s side’s friend that has multiple sclerosis. Oh, and she tried some snake oil therapy and now she has zero issues! Nothing is a bigger slap in the face to someone with chronic illness than that particular scenario. In an instant, you’ve belittled our disease, shown it’s not important, and displayed that you know nothing about it. It’s unfortunate, but I think everyone with the Multiple Sclerosis has experienced that same scenario, multiple times too.
It’s just one reason that getting to know our disease is so very important to us. We meet so many people who don’t understand it, we see celebrities with it try to act like it’s no big deal, and wow, even a company that manufactures one of our core medications produced a tone deaf commercial that basically made us all wonder if they had any idea of what it’s actually like to have this disease (How can we have hope for a cure when something like that happens? When a company that should know the disease the most demonstrates that they clearly don’t).
Knowledge & understand go a long way
Some folks will say, well, what about doing the MS Walk and the MS Bike ride and Swim for MS? Isn’t it much better that I do these things that will dump money into research? My answer to that is, first of all, thank you for doing those things. Raising money for research by walking and riding bikes is amazing. Swimming for MS is exceptionally helpful because it raises money for service programs and crucial cooling vests that make a major impact on the lives of MSers on a daily basis. Please keep doing all of that! However, if I had to choose one or the other, in my opinion, I want folks to take a little time and learn about my disease. Knowledge and understanding go a long way.
Having MS can be lonely
Having a disease like multiple sclerosis can be pretty lonely. A big reason for that is because very few people can understand what we go through. The invisibility of many of our symptoms makes it especially difficult for people to see what we are dealing with. We often like to say “you don’t get MS until you get MS” because so few people really seem to understand or at times even know anything about the disease. When you feel so isolated, seeing that someone is taking the time to learn about your illness, taking the time to learn about you and what you go through, makes you feel so good, so loved. Donations are great, but wow, to me, nothing can compare to knowing that someone cares enough to read up on my disease. Even better if they have some questions for me. That shows you care and that’s what so many of us need in our daily lives.
However, there is one caveat to this. If you learn about my disease, you are no doubt going to come across some alleged “cures” and you will want to share them with me. Please don’t. They aren’t real. Yes, you want to help, you want to do something, but understand that there is no cure. There is promising research going on but there is no cure yet. Understand that if there was a cure, we would know about it. Believe me, we’d be shouting it from the rooftops. Along with this, please don’t believe with your research that you know more about the disease than we do. Understand that we want you to learn about our disease to better understand and accept us. To more easily accept why we need to cancel plans, or why we can’t go on a long car ride, or why we need a day in bed. It’s your understanding we seek, not your efforts to try to fix us. You can’t fix us but believe me, but for me, at least, trying to understand us is close enough.
Share what you learn
So I’ll say it one more time, if you want to help someone with multiple sclerosis or another chronic illness, please take a few minutes to learn about our disease. Read an article on MultipleSclerosis.net or check out the learning sections on the National MS Society or the MSAA web sites. Learn about the disease, share what you learn, and let your loved ones know that you can’t fully understand what they are going through but you’re trying as best you can.
Does anyone experience worsening symptoms with cooler or cold weather more so than warm or hot weather?