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The #1 Thing You Can Do for Someone with MS or Chronic Illness

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.

The caveat

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • dee32baby
    3 years ago

    Thank you for sharing, I know just what you mean. I have so many people telling me oh wow you look good. Well thank you I say, but just because you do not see that is really going on inside my body then you can not understand what I am going through. I also have many people ask me can you tell me what MS is? How does one know they have it? How can I help someone who has it? I know that the Multiple Sclerosis Foundation has helped me a grate deal with so many readings and welcome packs that I order so that when people ask me about what MS is and what happens to someone who has it? My family sadly doesn’t understand and I don’t think they even want to. But I’m good enough to take and raise may granddaughter (my son’s daughter) but but then when I need the help because I’m not feeling well, well you look fine to me you’ll be ok. I’m just trying to get over a flare up and I’m now also being put into an electric wheelchair because I can’t walk now due to this last flare up. Anyways thank you so much for sharing. I could relate a lot!

  • Devin Garlit moderator author
    3 years ago

    Thanks you dee32baby! Looking fine on the surface is one of our biggest issues. I think people seeing us and thinking we should be fine is something that just about everyone with MS has had to deal with at some point. Sounds like you have a fantastic attitude! I very much believe that MS only hits the very toughest and strongest of people! Thanks so much for reading and taking the time to comment. I appreciate it very much!

  • AnneWallace
    3 years ago

    Thank you for this wonderful essay. I’m 61 and was only diagnosed 4 yrs ago.
    It began with Lyme disease in ’09. While there are physical issues, my biggest ones are cognitive and fatigue. Suddenly my short term memory nearly disappeared, reading retention was pathetic, and I developed dyslexia. This forced me to sell the business I ran successfully for 30 years. Devastating. For me, the WORST comment is “Oh, you’ll be fine. You look great.” In the meantime I can’t see 4:00 pm without Ritalin, the drugs make me so vulnerable to infection, and I live alone. NOTHING ABOUT THIS IS FINE.

  • Devin Garlit moderator author
    3 years ago

    Thanks so much AnneWallace for reading and taking the time to share your thoughts! It’s always very appreciated!

  • DonnaFA moderator
    3 years ago

    Hi AnneWallace, we’re glad you enjoyed the article. I’m sorry to hear about your business, and that you’re struggling with cognitive changes. Please know that you’re not alone, we’re always here when you need information or support. Also, if you haven’t you may consider visiting our Facebook page to join the conversation there as well.

    Many of our members have distressing cognitive effects. We do have many resources to help you feel less alone as well as tips to manage cognitive symptoms.

    You didn’t mention if you had family close by to help. If you visit Living Well With MS on the National Multiple Sclerosis Society’s page and scroll to the bottom left-hand side (under We Are Here”), you can connect with an MS Navigator, who can help you connect with resources in your area. -All Best, Donna (MultipleSclerosis.net team)

  • Humph
    3 years ago

    Devin,

    Really appreciate your post ☺. I wish I could find the time to post my thoughts.

    Robin
    RR>SP ~2012

  • Devin Garlit moderator author
    3 years ago

    Thank you Robin, I very much appreciate that!

  • poetgirrl
    3 years ago

    Devin, thank you so much for this. I’ve been thinking about this issue a lot lately. A couple of years ago I moved in with my daughter and her wife. I have SPMS, but I don’t even have to use a cane most of the time, which makes my condition a bit deceptive. In reality, I deal with many MS issues, particularly major fatigue, pain and some cognitive problems. I’ve come to see that they don’t know anything about MS. I have to say that I can’t help but think–no, know–that if someone I loved had a chronic illness like MS, I would have just naturally wanted to know everything I could in order to understand and help, so I guess it’s a little hurtful that my daughter didn’t do that, as far as I can tell anyway. But we’re all different, and I know that she does love me. I realize that I shouldn’t berate her for not having learned about MS, but instead show her this article and ask her to read about my disease. Thank you so much for helping me have the wherewithal to do that.

  • Devin Garlit moderator author
    3 years ago

    Thank you tfs!

  • tfs
    3 years ago

    I relate to these comments as my symptoms are almost identical. While I know my two adult children love me, I believe they are too devastated by my disease and used to me being “Mom.” My husband is immersed in his own pain as well. I am dedicated to being my own advocate. I might show them this article – but then again – Nope. Not today. I am going to keep the limited energy I have and try to understand.

    Devin: keep writing. You hit the nail on the head every time. Big Fan!

  • Devin Garlit moderator author
    3 years ago

    poetgirrl thanks so much for reading and sharing your thoughts. I think the deceptiveness and invisible nature of our disease heavily contributes to people not really researching it enough. It’s not as in your face and on display as some other diseases. I try to think about that with my own family and, as you mentioned, I tend to share articles with them and ask them to read it. That’s actually what I base a lot of my articles on, things I want my family and friends to know. Somehow it always seems a lot easier, particularly in today’s age, to just share something from the internet. I have hope though, that some shares of this one will get some people’s family members to do a bit more research on their own.

  • Dimitri
    3 years ago

    I’ve never really thought about what people around me can do to make me feel better. An important thing to remember too is that every person with ms is different. I too had a family member with ms and our symptoms were quite different.

    You’re right about not sending MS crap you found on the Internet. A friend sent me an article about how Diet Coke causes MS. OMG, I lost it.

  • DonnaFA moderator
    3 years ago

    Hi, Dimitri! Thanks for sharing your story. It’s frustrating when people believe the snake oil solutions that abound, and speak with conviction that they know the solution to what ails you. Please know that you’re not alone and that we’re here to share support, and information. Thanks for being part of the community! -All Best, Donna (MultipleSclerosis.net team)

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