Advice for Family and Friends of Someone with MS

Advice for Family and Friends of Someone with MS

For people with multiple sclerosis (MS), a strong support team is vital in life. Some people may need a primary care physician, a neurologist, an ophthalmologist, a physical therapist, an occupational therapist and a good nurse but what all people need is family and friends. People to help us up when life pushes us down. People to help keep us up once we are standing. Social interaction is important for all people but maybe even more so for anyone who is living with a chronic disease like MS.

Every once in a while, I get an email from someone who says they are the caregiver or a friend of someone with MS and that when they try to look up information for helping someone with MS it is always from the perspective of a caregiver and not from the perspective of the person with MS. They want to know what we (people with MS) want. I have never really known how to write about that so I keep putting it off but the emails keep coming so I figure it’s time for me to try to voice my opinion on what I think are a couple of the most important things people with MS want/need from family and friends.

Now this is just my opinion based on my perspective and my experience living with MS. What is it that they say is the key to a healthy relationship? Communication; yes, what a cliché but I think this totally works for MS. Communication; it’s simple, ask us how we are feeling today but really mean it. Don’t ask in a small talk “how is the weather” kind of way, you have to really want to know how we feel because there is a big difference between “not feeling the best” and “there is a weird pain on the top of my hand and my skin burns when I run my fingers along it” and what we tell you is probably based on how you ask. If it sounds like it’s just a small talk way of starting a conversation then chances are we (or at least I) will assume that you really don’t want the longer answer (AKA the truth). I am all too familiar with that look of “uh-oh, why did I ask, I just opened up a huge can of worms” that people give me when I am trying to explain what is going on with me. So it feels really good when someone asks me how I am doing, I tell them and then they ask me for more details because it makes me feel like they are really trying to understand what I am feeling and that is probably one of the most frustrating things about life with MS; feeling like no one understands or even wants to try to understand how we feel.

After that I would say it is important to try to offer us help even if we do not ask for it. A lot of us have developed a sense of pride/stubbornness that prevents us from asking for help. “I can do it, I know I can, I don’t need help, I can do it by myself” but sometimes that leads to us pushing ourselves too far especially in a situation where if someone had offered us help we would have accepted it but since no one offered? “I am just going to do it by myself”. Maybe this is just me (because I have always had a huge sense of pride and been really stubborn) but I know I have a hard time accepting that I can no longer do something anymore so I will try and try and try to still do it on my own. Asking for help (in a situation like that) feels like I am actually accepting that change has in fact occurred but at that time I am still in denial which is another “me issue” that I have to learn to deal with properly but something friends and family might want to be aware of. If you know we are struggling to accept a specific change maybe don’t keep offering help in that specific situation if it seems to really be frustrating us. I don’t know if that is necessarily healthy, I am not a therapist, and I know that the average family member or friend cannot read minds but that is definitely something that goes through my head. “Will you just leave it alone? I said I can do it!” but more commonly what I am thinking is “man, even though this seems simple and stupid I really wish someone would offer me help because I really don’t want to be the one to ask for it”. Yes, we (people with MS) have to learn to ask for help. We have to understand that communication is a two-way street but all I am saying is that maybe that is what we are thinking while we are trying to learn how to better deal with everything and knowing what we might be thinking (and possibly unable to express) may help you help us.

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Comments

View Comments (6)
  • slsweeney
    2 years ago

    Matt, this article seems like it was written by me. It was definitely for me. This is exactly how I feel. I even told my husband that it seems like you never actually check in with me. When he asks how I am doing, it sounds just like you said. “small talk, how is the weather”. He got frustrated with me because I didn’t give him an in depth answer, but it doesn’t feel like he really wants to hear the truth. I definitely have to answer the “how are you” questions based on who is asking.

    It is so nice hearing I am not the only one who feels these things. Thank you very much. It was so validating.

  • Matt Allen G author
    2 years ago

    I have talked to SO MANY PEOPLE about this, it’s a common issue that we all struggle with :/

  • tfs
    2 years ago

    I think you hit the nail on the head: social interaction is necessary for all people, but especially so for people with MS. I agree that we need to be very assertive in our health care by seeking expertise with our family physicians (we are often their teachers), persisting with the best care we can find with our neurologists, and I would include neuro-psychiatry that specializes with multiple sclerosis. The help is out there through MS Clinic(s) but you have to knock on the door yourself. I really hope every person with this disease gets the help they need and deserve because they are worth it!

  • Matt Allen G author
    2 years ago

    yes, and even for me, being the one to get up and do the knocking is not easy!

  • mascha
    2 years ago

    Great article again 🙂
    I shared it on fcb and my husband realized i have none of the things you mentioned. No neurologist (not known well) no MS clinic. Basically nothing .
    I live in Monaco and although great emergency department,there’s no MS support network. I used to live in Australia and 7 months ago went back for MS support. I ended on the waiting list and ended up back in Monaco. I was birn in Holland but left at a young age. I am seeing a neurologist in Amsterdam in 2 weeks. After reading your article me and my husband realized that we need to maybe have a second base( home) in Rotterdam as they have great MS clinics.
    In the meantime my cousin text me. Haven’t heard from her for a while 🙂
    So thank you!!!!!

  • Matt Allen G author
    2 years ago

    Hmmm, do you at least have a regular doctor? I think at least having ONE person who has at least seen how MS had affected you over a period of time would be good because he/she may be able to see something about you that you don’t even notice and that might be an important puzzle piece in trying to treat you down the line.

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