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Two women having coffee in a kitchen. One is intently listening while the other speaks.

For Friends & Family: How You Can Help

Since I’ve started writing about my life with Multiple Sclerosis, I’ve had the pleasure of talking to folks who have been touched in every way possible. While this is often people who live with the disease themselves, I do get the opportunity to talk to some folks who have loved ones with the disease. They usually reach out to me to ask how they can be of help, what they should be doing, etc. So, I figured for this segment of my “For friends & family” series, I’d focus on some ways that the friends and family of those with MS can be a bit more helpful to the ones they care about.

Be there to talk to and listen to them

Sounds simple to say “be there,” but what do I really mean? Yes, obviously it’s important to be available if they need to talk or need help. Recognize though, that you can be there for them without talking about their disease. For many, if they have a chance to talk to their family or friends, it may be a welcome distraction from their illness. Bottom line, not everyone wants to talk about their disease. On the flip side of that though, they may very well need to vent about it. If they do, the important thing to remember is to simply listen and not try to fix their issues.

Don’t compare yourself to them

It’s also important to try to empathize without comparing your experiences to theirs. I guarantee you, if your loved one is saying they’re tired, they really mean that they are fatigued. It is not the same tired that you have felt, and it’s best not to make that comparison. Nothing screams “this person doesn’t get it” to me more than when they compare how I feel to something from their every day, still healthy life. The words “me too” should never come out of your mouth.

Check in to show you care

Listening is important. So too is checking in. Honestly, just an occasional text asking how I’m doing is nice. I may not say much or even want to talk, but getting that text can be incredibly comforting. Checking in on someone is one of the greatest ways to be there for someone, not because you expect them to talk or do anything, but because it’s a way to show that you care and you’re thinking of them. Even a text that just says you are thinking of them can be tremendous.

Be available

Being there can certainly mean in the physical sense as well. A lot of folks with MS, or other chronic illness, can’t do everything as easily as they once could. Even if they can, that act may have consequences later, as they’re spending precious energy on it. Offering to drive, coming to them as opposed to them coming to you, helping clean, and even picking up some items at the store for them can be extremely helpful. While doing those things is great, it’s important that you ask them the right way. I have to say, if someone says to me, hey, want me to pick up a few groceries for you? I’m probably gonna decline them. However, if you say, you’re already going and can pick up a few items, then maybe I’ll say yes. Asking if you want to visit? Nah, I’m OK, I don’t want anyone to think I need anything. However, if you say that you “will already be in my area,” I’m more inclined to say sure, pop on by. No one wants to feel like they’re a burden or need special attention.

But know when to not be there

I’ve often had the loved ones of people with MS reach out to me and tell me a story of how they are trying so hard to help their loved one, but the person won’t respond. While making an effort to help someone is important, you can easily overdo it. As much as I get lonely, I still need my alone time. At the end of the day, I’m the one with the disease, it’s my fight alone. Yes, support is important, but remember that you are supporting me, I’m the one going through it. Don’t be too overzealous when it comes to being supportive. If someone needs their space, give it to them and check in another time. This disease is both mentally and physically exhausting because of that – there are many times where I just can’t deal with people.

Learn about our illness

As I’ve said before, the number one thing I think you can do for someone with a chronic illness is to learn more about their disease. It’s important to read about the disease and its effects on people. I also suggest you tell your loved one that you want to learn more and ask them to point you in the right direction. I think it’s important to not only understand the disease, but also the ways it can affect someone, both mentally and physically.

Thanks so much for reading and always feel free to share!

Devin

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Comments

  • denver44
    18 hours ago

    Devin have read a number of your articles and see my life in a lot of them. Was diagnosed in 1981 . Did fairly well until the last few years. Dr says spms. Don’t know much about this so looking for info and others with the diagnosis.

  • Jbrown38
    2 months ago

    OMG, you have me in tears. The last sentence in “BE AVAILABLE,” that’s me. And my family really DON’T understand what I deal with. I don’t try to make them understand because they’ve already said I’m a FAKE. That has hurt me so bad, like a knife in the CHEST. They don’t know and really DON’T listen when they on a rare occasion ask questions. It’s hard and I do miss a lot BUT not because I don’t wish to be there; I’m just not up to it at that time. AND, on top of all that, my children are aware of what’s going on; they see everything. Basically, they see and hear how my siblings are, and then want nothing to do with them. Of course I get blamed for that too. THANK YOU SOOOOOOOO MUCH!!! I wish you had a little magazine for people who have family and friends dealing with MS. TITLED:Things you THOUGHT you knew about MS Be blessed and keep the post coming.
    P.S. I’m going to need you to put these post in a letter format, and mail it to me so I can distribute them to the ones that only THINK they know. LOL,

  • Devin Garlit moderator author
    1 month ago

    Thank you @Jbrown38, so sorry to hear what you’ve been through. I hope that maybe sharing this with them might be helpful. I find that sometimes, seeing something in the words of others can really hammer home the point more than listening to us.

  • michael honeycutt
    2 months ago

    Another great article Devin! You’re much more articulate and kind than I am. Not that I don’t try to be kind but these days my patience is short and my fuse is not long. People don’t understand what MS is or does. Almost every single “friend” I had 8 years ago, bailed on me. My wife, two sons and divorced, elderly parents are who stuck by me. One brother had to be clipped from my life as was his entire family. The other brother is friendly enough but doesn’t care enough to check in much, maybe every few months. I was devastated by the loss of friends and family. But the negativity that they induced in my life is something that I don’t miss in the slightest way. I’m making new friends, VERY slowly. People only see the wheelchair when you first meet them and I want them to see ME. I want them to see that, while I need the chair for any distance, I can walk slowly and carefully. New friends have to be educated and that process takes time. It weeds people out pretty quickly. So far, one other couple has made the effort and even that relationship is strained by MS issues. Folks just don’t understand that, perhaps they DO have a swimming pool and, while I appreciate the offer and it IS very hot out in the New Mexican desert, I not only can’t sit outside in the sun next to their pool, I CANNOT CLIMB THE LADDER INTO THE POOL!!! A wobbly, 6 ft ladder in front of me might as well be the Great Wall of China! They meant well but just don’t get it. Oh well..,…

  • Devin Garlit moderator author
    1 month ago

    Thanks so much @michael honeycutt, very much appreciated!

  • Janus Galante moderator
    2 months ago

    Hi Devin,
    I have had to tell 2 relatives that tend to be very long winded on the phone that if I say “I have to hang up, it means NOW.” Explaining that sometimes following a long conversation can be utterly draining until I simply cannot participate any longer.

    I’m not exactly sure how they took it, but I tried to reassure them that it’s just the way things are now.

    I absolutely am a strong advocate on sharing articles and helpful information with family/friends. For some, unless they do their own research, it’s the only way they’ll learn about m.s. and why it affects us the way it does.

  • Devin Garlit moderator author
    1 month ago

    Thank you @Janus Galante, I[ve had that exact same thing happen during long conversations with family members! You hope they understand, but I always wonder if they really do!

  • Kaos
    2 months ago

    Wonderful article, thank you!

    I would like my friends and family to understand that I’m good for about one, out of the norm “event/thing” per weekend and only about 2 weekends a month depending on treatment, weather, sleep, etc. So if I decline a dinner invitation on Friday night because my sister is visiting on Saturday, it’s not because I don’t want to see you or don’t appreciate your hospitality. And I never want them to feel like they shouldn’t invite me because I always say no. I just want them to understand my yes’s are very limited to everything and everyone. I have to meticulously plan out my calendar and consider a ton of things even to have a dinner “out”.

  • Devin Garlit moderator author
    2 months ago

    Thank you @Kaos, I find setting the proper expectations with my own family and friends a bit difficult, but it can certainly be done. Proper expectations make everyone a bit happier in the long run.

  • Legsonstrike
    2 months ago

    Found this article just in the knick of time. I cannot tell you how much i appreciate your articles and the way you explain things!! You really are a life saver in my world of not being able to explain how i feel!! Thank you Devin!

  • Devin Garlit moderator author
    2 months ago

    Thanks so much @Legsonstrike, very kind of you to say!

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