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.