A question for the Multiple Sclerosis Community

Who are your biggest supporters specifically when it comes to your or your loved one’s condition? For example, your doctor, friends, family, or someone else? And what are some examples of how they have supported you through this journey?

Answers from the Community

My husband has been a constant support from day one. He was really taking his vows of in sickness and in health very seriously, and he has been there with hope, with optimism, and more pragmatically, he’s there to take the reins to help with everything that I cannot do. When I just simply run out of steam during the day, he’s there, and he will make the household run, and he will take care of our son, and he will do everything it is to maintain our household, to maintain our marriage, to maintain our happiness. And, he’s a rock, so he has been my number one supporter when certain friends, and families, they have been intimidated or scared. They disappear from my life, but my husband has been there for me through every step of the way.

My children and my mother are definitely my biggest supporters. My children do work in the medical field, albeit not one that’s directly involved with healthcare. So they have advised me as to which walkers to get, what exercises to do. My mother is just phenomenal in sports base, listens to what I have to say, and what I reiterate to her from what my physicians have said. So it’s just a wonderful support system, I couldn’t ask for better.

My family mostly. My husband especially, my husband is right there. My children are right there for me. My husband’s… while I try to do something I know I shouldn’t be doing. MS really gets affected by the heat, but then I’m, “Let’s go out in the heat of summer,” and he has to remind me, “Hey, you have MS. You will probably get overheated.” But then I’m like, “No, I should go out in the heat.” So he has to remind me, “Hey you probably shouldn’t do that.” My grandparents will take me to the doctor. My mom will take me to the doctor when I don’t have a ride. So family, especially, they’re very helpful.

My family has been my huge support group. My husband, particularly, he has learned about MS, learned about what I go through. So has my family. They are very conscious of my triggers and things that I need to stay well. And so they are there. They’re like little reminders for me.

My spouse has been the biggest supporter. He is the one that has to live with me, and who I lean on. He has been there for me in terms of accepting my crazy need for lots of rest and not being able to do a lot of things. And just rolling with the flow, accepting and modifying his life in certain circumstances when he had to take off work or whatever. Whatever was needed, he puts me first, and that has been great for me.

I’m my wife’s biggest supporter by far, I guess our kids would be another supporter or her family, my family, my mom is a pretty big supporter of her. And that’s it.

My biggest supporters actually would be a couple of my friends. I had a friend that has been with me since the beginning, which was way back in 1990, and she still supports me still and tells me how proud she is of me and the way I handle things. So, she’s my biggest supporter. I have some other friends that … Well, two actually that I’ll go out with them and they actually assist me when I need help because I have trouble with steps and stuff, and they make sure that I get to where I need to be. As for my family, they’re supportive I suppose, but they don’t do anything specific for me, so I guess it’s mostly friends.

Biggest supporters would be my sister, my little sister. She is my biggest supporter, my biggest fan, and also a nurse. So she helps me and knows how I feel, and when I’m feeling good and when I’m feeling bad, and knows all about my health. And, I have a good support system, as far as my special man in my life, and my friends, and my family. So I’m pretty lucky with all of that, for sure.

I think my biggest supporter is my dad. He helps me pay for my monthly medication, and he also asks if I need anything else to help me out. I also think my doctor is a huge support system. She talks to me for a long time when I go into my appointments, and she never judges me when I ask her a question. My husband also is a big supporter, and he will help me with chores and any other little thing I can’t do, like going into the store just to run and get something, and I’ll just sit in the car and wait for him instead of me having to physically get out and go into the store, knowing that I’ll get tired if I start walking around the store.

I have to say, my husband’s my biggest supporter. He puts up with…Being in his 40s and having to go on vacation with the kids by themselves and having to do trips by themselves and visit family by themselves because I’m unable to spend hours in the car because it’s uncomfortable. Or having to sleep by himself sometimes because my insomnia’s kept me up for days because I’m twitching. He’s put up with so much. Amazing, I guess, that I’m still married. Now I understand why the divorce rate’s so high amongst the MS community.

Well, my biological family, I have a couple of friends that also have MS. And I have one special friend who I call my MS mother, who I pretty much look up to. I can talk to her about anything. And she supports me and gives me like great advice or whatever, and asks me to look at the situation from a different perspective. So I basically, grateful for those that I have in my life and that know that I have MS and they support me. They love me, and they support me and want me to continue to do better.

Oh my, I guess the biggest supporter for me would have to be my husband, my husband, and my son. They have really been there, they’ve been really supportive and they’ve come to my rescue. I’m absolutely exhausted. I also, I’ve got a pretty good friend in my doctor, she’s really supportive. I think that’s just something there saying, “Hey, how are you doing? Do you need anything that kind of makes it a little bit more bearable?”

My parents have definitely been my biggest support. They’re always trying to help me find answers to better live around what I deal with. They had just always have my back, no matter what.

My biggest supporter is my mother, my sister, and two of my friends, and my coworkers at work. My mother and sister, no matter what I need, they’re there with me. My mother go with every doctor’s appointment with me. She’s my right hand, man. She, no matter what’s going on, she’s right there with me. Like I said, she go to every doctor’s appointment. I go to the doctor in like a three-hour drive to get there. So, she’s always there with me. She’s been with every doctor appointment. Since 2016, she’s been with every doctor’s appointment. I have two friends that… I can’t drive that far. So, they’re either with me when I go, they driving me there. Or if I have to go to the doctor, they are there with me. They take me to pick up my medicine, my grocery. If I need anything, they will… When my hands or something bothering me, they’ll come and do my hair, wash my clothes, clean my house. My coworkers, they are amazing. I can go to work and if I’m not feeling good, so I don’t have to take off of work and miss a lot of days, they will bring the work to me or they’ll tell me to sit there and they’ll do the work. So even though, I won’t get written up or anything. So I have some amazing supporters that just there for me, no matter what. So, I appreciate that. I do have a team that supports me, but most of all, my sister, no matter what I need, how much it costs. If I can’t go to work, when I was off for three months, no matter what happened, she… My husband was off with me, so we didn’t have no extra income coming in. She paid my bills. She was right there with me. My husband, he supports me. He is here for me, but at the same time, he is… I don’t think he really understands, or he don’t want to accept that I am sick. He feels like I should be able to do the same things that I used to do. But, in all, they all here for me. And that’s a blessing.

That’s a really good question about, who is my greatest supporter. You realize when you are diagnosed with a chronic illness, you find out who your true friends really are. And I found that even though people care about me, they do not understand the road that I’m walking unless you are walking it also. So my greatest supporters has always been my mom. She understands me the best. And my other friends with MS. I joined an MS bowling league and I developed friends through that. And through going to MS medicine dinners. Because when you have an illness and somebody else has the same illness, you guys can commiserate and be very supportive of each other. Other people they don’t have it, they just don’t understand. And if you say something like, you’re feeling dizzy today, well, they feel dizzy too. And they’re just like, “Well, I get dizzy too.” But it’s so different. It’s not a normal person’s dizziness. People just don’t understand unless you go through it yourself. So my suggestion would be, reach out to the MS community and make friends with people that understand your journey.