Building Your Support Network

Building Your Support Network

I was trying to think of more blog topics and I started reaching out to some of my friends with MS to see if they had any great ideas, and that’s when it hit me. Duh. Having friends with MS and what a game changer that can be. When I was first diagnosed I didn’t know a single soul who had MS so I took to the internet to find some other people, specifically people in their young twenties. The people I found, and the friendships I created were crucial to my acceptance and understanding of living with MS. If you’re newly diagnosed, I’d ask you to consider who is in your support network? Do you have friends and family who will support you? Do you know other people living with MS? Do you know anyone who you can meet with in person who has MS?

I have a core group of about 4 people I know who live with MS who I can call up, text, email, FB message with any and all of my MS related problems. In the beginning, we often contacted each other to talk about MS related things and our lives in regards to MS. But as time has passed we’ve created friendships based on more than just MS. These are people who I don’t talk to everyday but I know will drop anything to talk with me if I needed it. Having a supportive family and friends is really important, however when you find people who “get it” it really can change everything.

If you’re one of those people out there who doesn’t know anyone else, who just reads blogs, and who just looks at forums, I would urge you to get more involved and find some MS friends. Its incredibly satisfying to have people who understand you and even more so validating for your symptoms. It can be helpful to have people to bounce ideas, or treatments off of who are knowledgeable on the topic. If there is a blog you really like, email the writer and create a friendship with them. This road is a lot easier to travel when you have travel buddies!  For me some of my MS friends are people that I talk to frequently, or hop on a plane to go visit. They are people who will take a train to see me, or will check up on me after starting a new medication. They are people who genuinely care about my well being overall not just about my MS.

As someone who is a member of multiple chronic illness communities, I can honestly say that the friendships I’ve built with other patients are unlike any other friendships I have. They are stronger. More valuable. More like family. Because so much of my life is focused on advocacy and awareness of my conditions, most of my friends have some kind of illness and my life is so much easier because of it. If I’m too tired to go out to the bar, or I  need a nap mid day, my friends all understand and might just take a nap too! I truly value these people. Looking back on my MS journey, and not found the blogs and communities I did at the time, I don’t know where I would be right now in terms of acceptance and understanding. If I had tried to go at this alone, I would have had a very different experience. I have met a few people on forums, and those can be a great place to find a lot of people, and if you’re lucky even someone who lives close to you, however a bit of a warning about forums. Many forums are a place where people go when they have questions or problems. Most people don’t go to forums to post about the great day that they are having, and in the beginning I found forums very depressing and made me question my future often. I think forums are a great resource but if you don’t have a question or an experience to share, I would urge you to find companionship elsewhere. Nowadays, we’re lucky because so many people are out there telling their stories in blogs, so you get all sides of live with MS, and its a true and honest account. Those are the people you want to be friends with, as those people are obviously willing to share their own story and often are more willing to help others too.

Who is in your MS support network?

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

View Comments (13)
  • Lizaan Nel
    2 years ago

    Hello.. So, ive being diagnosed with MS about a month ago.
    Started with meds REBIF. Not sure yet, being bringing me under. My body still has to get use to this new life style. Otherwise YAWN 🙂 Always tired. I am 27 years old Married and our Son is 5 years old. Did not know MS was out there, but atleast I know now why i felt the way ive being feeling. Do not know any other person with MS and would like to have company in this MS 🙂

  • DonnaFA moderator
    2 years ago

    Hi Lizaan! Welcome to the community! This is a great group of people and you have plenty of great company here.

    There is tons of information on the site, you may be interested in checking out these articles with resources for the newly diagnosed. You may also want to check out our Facebook page. Please know we’re always here to share support and information.

    We’re glad you’re here!-All Best, Donna (MultipleSclerosis.net team)

  • thumper
    3 years ago

    As of this post I am one of those people that only post in forums. I am actually involved or Was involved before Social Media as a Peer Phone Support Counselor. I don’t however have those contacts any longer. I am Not in my Twenties,although other than my family ,two which do have M.S. I have none of my own support people. I would Love to have what you mentioned as a support team and Friendship. I have lived with my M.S. for 24yrs. I have a sister and a daughter with M.S. It would be Great if you could direct me to other Mothers who also have a Grown Child with M.S.

  • Dianna lyn
    5 years ago

    Oh yeah north-star..i have a dog..cocoa..she gets me out of bed every morning also…

  • Lizaan Nel
    2 years ago

    🙂 That is fantastic. My clock has changed to 5am the morning 🙂

  • north-star
    5 years ago

    This is a good topic! I don’t have a network of MS friends. My MS friends coped with very different experiences.

    My former neighbor is into natural healing, she’s struggled with MS, but so have we all. I use Copaxone 4 times a week. It could be water for all I know. But I’ve decided to trust my neurologist and this is the therapy we’ve settled on. MS affects everyone so differently— she’s made me wonder what would happen if I stopped medication and relied on alternative healing therapies: diet, body work, massage, acupuncture.

    Another friend and I found a yoga class for people with MS. But driving home pretty much obliterated our yogic relaxation. And my yoga buddy turned out to have a rip-roaring, merciless case of primary progressive MS. She died after a few years of gradually losing everything. I was no better for her than someone off the street. I was all about making adjustments, like learning to drive with hand controls. She was losing on all fronts. It was profoundly depressing.

    I’ve been to drug company presentations and most people there were the folks Steve’s neurologist warned him about.

    I think of my current support network: people in my life who are family or friends who “get” MS (some people without the disease have never known me any other way). It’s almost better that they don’t have MS because I can forget I have it while I’m with them, especially if we’re having fun or we’re working on something that captures my interest.

    One big part of my support network died earlier this year, my fifteen year old dog. I miss him lending a patient ear as I bitched about life issues MS people understand: getting my socks on, shoe v. feet battles, nap v. carrying on, daily annoying stuff. Days when I drop every other thing I pick up, I really, really miss his thorough cleanup skills if I drop something edible. He was always “in the moment”, never looked ahead, the past was over and done with. Every day was an adventure he experienced with his whole being. He kept me centered, too. He needed food, fresh water, exercise. It wasn’t all about me.

    I really appreciate this topic because I’m in a transition phase. Maybe I do need to find new MS friends. There are things I would never share with my husband or friends, but all of us with the disease understand the MS “hug”, we can imagine a leg or arm suddenly giving out, or empathize with the embarrassment of not making it to the bathroom in time.

    I like the format and topics here so I’ve dropped in regularly. Maybe this is enough sharing? I envy you all who have MS friends.

  • Dianna lyn
    5 years ago

    Hi, I was diagnosed in 2007, and I have been trying my best to get on capaxione..sorry the spelling my cousin recommended it, to me…My neurologist has refused it to prescribe it to me. So, I have been using parsley, fish oil..calcium..lots of it,lots of other vitamins, and basically eating other healthy vegs..homegrown spinach, lettuce, kale, garlic..anything healthy, and lots of exercise …above normal activities…i am only 128 lbs..and 5″3′..so very healthy…i do take Motrin for inflammation and I am on neurontrin for neck pain…really bad pain..i take vicodin..usually at night..with heating pads all around me..i thought this might help you

  • zane
    5 years ago

    I’m like steve not knowing any one with MS I was diagnosed in 1998 while I was in the navy so they discharged me after 13 yrs in the navy but at least I get a dis. check from them. I had my had my wife and daughter but I wife passed away about 1 1/2 yr ago like steve said I don’t any one with this illness so the only ones I had was wife basically. I hope I will be able to get some other people in here to chat with about our illness.

  • ShinyCat
    5 years ago

    Just a slight point of correction, as it caused me some confusion when I was reading the article. Something that is “detrimental” has a negative effect on you. I’m not sure what word you meant to use, but the implication certainly seems to be that the effects were positive rather than negative. Otherwise, excellent article!

  • FichenDich
    5 years ago

    Until I attended a local support group a couple of months after dx I was the only person I had ever known who had MS. It was the most tremendously invaluable experience ! Sadly the group disbanded just over a year later. After that I haunted an MS chat room for several years. I met several people there who have since become real life friends. Sadly too, the room disbanded for a while. When it was reconstituted it was not at all the same place.

    The point is that it is imperative to encounter others. And as many as possible because it affects everyone differently. The more who you encounter, the greater your chances of meeting someone who’s experiences are similar to your own.

  • Laura Kolaczkowski
    5 years ago

    Before MS, I had a heart attack – and in trying to understand what had happened and why, I spent a lot of time with Dr. Google until about six weeks later I found a link for Prinzmetal Angina that took me to the best group of women who got me through that shellshocked stage. Funny but a core group of us became regular correspondents on that forum but moved on – my MS diagnosis that same year took me in a different direction. But that group of women who sheltered me and led me those initial months became great friends. We are still in touch regularly and laugh and share family tales but almost never talk about heart disease which brought us together. I wouldn’t trade these heart sisters for anything, but I now have another group connected through MS. We still pop onto the forums and help out the newly diagnosed, but we spend even more time on Facebook sharing laughs and family tales and only once in a while mention the MS.

    This is my long way of saying you nailed this, Jackie. Having met these people and developing the relationships allows me to put normalcy back into my life through friendships with people who really get it. ~Laura

  • Kim Dolce moderator
    5 years ago

    Excellent advice, Jackie. We have traveled the same road. The moment I started reaching out to a forum and got support and information about others’ experiences, my advocacy career bloomed along with an ever-expanding circle of valuable friendships that give me more support than my loved ones without MS ever could.

    I feel so darn lucky 🙂

    Kim

  • Steve Woodward
    5 years ago

    Great post!

    I have never known anyone my age (or even in the same age-ly ball park) with MS in the Real World, so without the people I’ve met online (the author included!) I would have been totally isolated.

    Interestingly, my neurologist told me to stay away from the internet for the reasons you outline above (olympic-standard symptom-comparison and complaining), and to avoid going to local support groups, “unless you want to get thoroughly depressed – the people there will be in a considerably worse condition than you”…!

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