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Isolation: When Our Disease Makes Us Withdraw

Isolation: When Our Disease Makes Us Withdraw

Since I’ve been at this MS thing for a while now, I’ve gained a tremendous amount of friends and acquaintances that also suffer from the disease. While Multiple Sclerosis may affect all of us a little differently, many of us have behavior in common because of our illness. We all, myself very much included, have periods of time where we try to isolate ourselves. Withdrawing from life can be a frequent reaction for those with chronic illness that makes all the sense in the world, but can be very detrimental to our health.

Why do we do this?

Doesn’t make sense right? How often do we complain about loneliness? I know I do a lot. Having a chronic illness can be a very lonely affair. That’s actually part of the reason I’ll isolate myself though. I’ll stop talking to friends, stop trying to leave the house, even stop looking at social media. I’ll pull away, even though I’m pretty far from being an introvert. I like people and talking to people and seeing people. There are times though, when my illness makes me feel like I can’t relate to anyone at all. That’s one of the reasons I get that lonely feeling in the first place, I start to realize, or at least feel, that I’m different than most people. That there is no way they can relate to what my life is like.

Our lives are just so different

It’s pretty hard to have a conversation when everyone is talking about their job and I no longer work because of my health. My life can seem so different from everyone else (and with MS being so different from person to person, that can even include others that suffer from the disease). Whether it’s the positive or negative parts of their lives, it rarely compares to mine. They’ve got a deadline at work, well, I couldn’t even shower today. Compares isn’t even the right word, our lives are just so different. The divide between my life and the lives of others always seems like it gets greater and greater. To the point that, eventually, I feel like I can never cross it and so I stop trying.

Less and less common ground

I’ve always been someone that can usually find common ground with anyone, but, I’ve been losing that ability over the years. Part of that is because I feel like I have less and less common ground with people, another part is that I interact with people less and less. My illness keeps me home much more than it ever did in the past. Like any skill, the ability to communicate with others, gets more difficult the more you don’t use it. What’s a way to deal with that? Well, for many, it’s to simply not do it.

Not only is being able to relate to and communicate with others a problem, let’s face it, being social with others is taxing. Even simply sitting down and responding to emails and other messages can be enough to incur the dreaded “MS Tax” for many people if they are having a bad day. For some, there are days when waking up and doing the bare necessities that are required to survive seem exhausting, let alone having the energy to be social.

You have to fight it though

Look, sure, it’s important for everyone to have some time to themselves, but it’s important to stay social too. If we are talking about the bare necessities required to survive, maybe being social isn’t at the top, but it’s very much part of the list. As they say, humans are social by nature, and denying that can be disastrous to our health. You can simply google the effects of solitary confinement to read the horror stories of what it can do to someone’s health. I can tell you from my own experience, when I withdraw from people, it greatly affects my health. My symptoms not only worsen but I don’t take care of myself as much as I should. So I get that it’s difficult and that it’s easy to pull away, but we have to attempt to minimize that behavior as much as possible. I know that for many, having some kind of regular social interaction seems near impossible. It’s not impossible though and it’s every bit a part of battling your disease just as taking your medication is. I hope to explore some options regarding ways of being more social with a disability in a future article. If you have any suggestions regarding that or other tips to help stop ourselves from isolating ourselves, please leave them in the comments!

Thanks for reading!

Devin

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Comments

  • kadubb
    2 years ago

    Just wanted to say this is just the article I needed to read, as I am in a period of isolating myself right now. Thanks for sharing.

  • Devin Garlit moderator author
    2 years ago

    Thank so much kadubb! Appreciate you taking the time to read and comment on it!

  • tfs
    2 years ago

    This is difficult to admit because of pride but this disease has made me look at my life carefully. As many people, I no longer work but I have kept in touch with a core group of women from my workplace. I have been very privileged to be associated through a major medical centre access to a rather fabulous neuro psychiatrist and have put quite a bit of work trying to peel the layers of the onion. Today, I am learning through a 12 Step Program about changing me. I read and attend meetings and am learning to listen and be listened to. I am trying to keep the focus on myself, change what I can, and accept what I cannot. Isolation is a killer, and though I am an introvert and live in the country, I force myself because I am worth it. I tried a MS Support group for a year and found some people attached themselves to me like velcro. It was too much and I needed to set boundaries and take care of myself for a change. Church Lady now LOL

  • itasara
    2 years ago

    Enjoyed your article very much. I pretty much have something in common with all who posted here especially “Luv my dog.” First my dog, I was with her 14 years and such a great companion to our family. She’s been gone 4 years and I just can’t seem to get another dog now. Not just because of the loss because I’m not motivated to want to take a dog for walks ( although God knows I need exercise) or take care of cleaning up after a dog or spend money on a vet, and also because I’ve become very dis-organized and I can’t have a dog until I clean up the house.
    Second, despite that I have a husband and five adult children ( one at home), I gre up as an only child, rather introverted and so I don’t mind so much being home. I have friends and a few I just don’t keep in touch.
    You said in your article “ I interact with people less and less” Which applies to me however I don’t know that I can’t blame it on MS. I am Very busy Online and it takes up way too much of my life every single day. I enjoy reading the articles and I belong to several MS groups On line, and I find it nice comradary to read articles like this and to chat with other people via posting who are going through similar or different issues because of MS.
    I have become rather unmotivated more. Could be MS and could be aging ( just turned 70). I have never been overly energetic but getting less and less.
    I don’t seem to have the same interests anymore in the days just go on and on each one about the same as the one before. I do get together once in a while with a few friends, And I’m always glad that I could get out. This morning my son and his wife From out of town and her parents and some friends of both of ours came over for brunch. I hadn’t entertained in a long time. l It was a big effort to clean up my kitchen dining room and find everything that
    I used to have to put out for guests, but in the end it was a nice morning, we all had. a nice time but even then, I’m not anxious to make a habit out of it.

  • Devin Garlit moderator author
    2 years ago

    Thanks so much for sharing itasara, it’s very much appreciated. I think it’s easy to become unmotivated when things begin to feel like they are a lot of effort. Increasing effort is something I think absolutely helps describe MS. Even doing the things we once enjoyed can make them become less enjoyable when it takes much more of us to do them.

  • Julie
    2 years ago

    It’s turned out to be very lonely for me. So why don’t I socialize more? For the same reasons you have listed. Who wants to deal with me and my myriad of problems?
    Who knows when I will feel up to going out or on a trip? Even short car rides have my legs spazing in pain.
    I can barely stand living with this crap, how can I expect anyone else understand it.

  • Devin Garlit moderator author
    2 years ago

    Thank you Julie, I completely understand that sentiment. While there will be some people that won’t understand, there will still be plenty that will. I know in my case, I tend to build it up as being more of an inconvenience and problem for others than it really is. I really do believe socialization is extremely important to us, difficult, but important.

  • Devin Garlit moderator author
    2 years ago

    Thanks so much ClaireElizabeth! I really appreciate that!

  • ClaireElizabeth
    2 years ago

    Devin
    Thanks for your articles. They mean a lot. It’s hard to believe there are so many similarities between us in the MS community. It helps to know there are others experiencing the same things.

  • Kelly McNamara moderator
    2 years ago

    Thanks for the kind words, @ClaireElizabeth!!! – Kelly, MultipleSclerosis.net Team Member

  • potter
    2 years ago

    I tend to become a hermit in the winter when colds and flu’s are floating around, I pick up everything so easily and then have it twice as long. I also hide in the house in July and August, the 105 to 112 degree weather can cause me to be confused. I get out and about and do yard work early in the morning so I am not entirely house bound. I try to make new friends but it never seems to work out. Everyone is to busy! I met a some one the other day who wants to see my pottery studio. She is close to my age and has fibromyalgia, hopefully we can become friends. Potter

  • Devin Garlit moderator author
    2 years ago

    Thank you potter! I completely get that, colds/flus, not to mention places jack up the heat. At least in the summer, I know places will at least be trying to keep the inside cool. That sounds very promising with the person who wants to see your studio!

  • stumblingbumbling
    2 years ago

    It sounds like we all feel lonely at times,yet there is a small part of us that feels we need to be connected to others. I have found joining small groups with common interest helps. For one thing , you have an agenda or reason for gathering. This takes away the stress of having to create a conversation your comfortable with. You can also research the subject on your own time and feel you are contributing to conversation instead of bending it to your comfort level. Who knows, you might forget about the ms for a while which is always welcome .

  • Devin Garlit moderator author
    2 years ago

    Thank you stumblingbumbling! I completely agree. Finding a hobby/interest is a fantastic way to help yourself. While I don’t have an in person group (yet!), I’ve found a lot of people online who share my interest in LEGOs and it’s been extremely beneficial to me (https://multiplesclerosis.net/living-with-ms/building-better-life-legos/)

  • Azjackie
    2 years ago

    I too withdraw because I can’t do the physical things my friends and family can. I carry a LOT of guilt because I can not. Fortunately my great friend understands and we schedule a “tea party” at my house. This way I can prepare all but the hot water in advance we can relax and get caught up.

    Also I am more than fortunate that my parents are still living and relatively close by so we can chat.

    Frankly my support group is depressing. Informational but depressing; discussing life insurance, end of life plans, hospice…very depressing.

    Without my friends, family, and home I would be a real mess. For me there is only so much reading and TV I can do. For me trying to mow the lawn, watering trees, and pulling weeds is a lifesaver.

  • Devin Garlit moderator author
    2 years ago

    Thank you Azjackie! Your tea party sounds great! I feel the same way about support groups, some can be great, but many can be, not only depressing, but filled with incorrect information, particularly ones online.

  • LuvMyDog
    2 years ago

    Maybe I’m luckier than many regarding being alone. I’m an introvert and therefore, enjoy my solitude and life with my dog.
    I’m happiest when I’m home with my hobbies, my television, which I’m addicted to and have been since I was a kid. I love to cook and love to eat. I hate noise from people, I don’t mind the noises of the city, i.e., ambulances, police sirens, etc.. I do enjoy talking when I’m out and about, I can be very social and I enjoy seeing the few friends I have left, but always glad to get back home to the quiet, my private little cave. I am not lonely in the same way you are. I am lonely for my beautiful little dog who passed away a year and five months ago. We spent nearly 16 years together. She was born here and died here and I will miss her for the rest of my days. My current little dog who I adopted a month after my little love died, is a nice little dog, a great little companion and is like Velcro, never more than a few inches away from me. I have withdrawn a little more than I used to but it’s okay. I don’t enjoy doing many of the things I used to but I think part of that is age and my close friends, who I used to travel with are all gone now. Everything has changed but I make the best of it, not much else I can do.

  • Devin Garlit moderator author
    2 years ago

    Thank you LuvMyDog, I can very much understand that. My current rescue is pretty much life (just as my previous one was, and in many ways, even though she is gone, still is). He makes the biggest difference in my life with this disease, more than any medication, more than any hobby, friend, or family member.

  • bethybright
    2 years ago

    I couldn’t relate to this more if I tried. It’s only been two years into my diagnosis and I barely recognize myself. I’m used to being the talker. Now I have very little to say in most “normal” conversations. I’m still working, doing my best to not let that go, but I relate so little to 90% of the conversations I have daily it’s almost laughable. I need to work on this too. Thanks for the reminder.

  • Devin Garlit moderator author
    2 years ago

    Thanks bethybright, I think being aware of it, is the first step to helping fix it. Even if we have less in common than we used to, we can still participate, but I think recognizing that we are withdrawing some is helpful in trying to combat it!

  • Dimitri
    2 years ago

    And the more invisible your disease is the more difficult it is to not isolate yourself. For me, most of the disease is in my head and not in my peripherals. I mean I have major cognative dysfunction. It can be so fustrating to socialize because when I open my mouth nothing comes out. I have that word finding problem.

    I would encourage any person with MS to find a MS support group. It gets you out of the house and it’s good to be around other people that understand the disease. And as helpful as online support is, there really isn’t any substitute for face to face interactions.

  • Devin Garlit moderator author
    2 years ago

    Thank you Dmitri, I have similar issues, in that if you just glanced at me, you’d likely not think anything was wrong with me. Conversations can be extremely hard at times. Not only word finding but even following along and understanding. If there are multiple people and it’s loud, it can be near impossible. I do have one other person that I know of near me that also has MS and our face to face talks are so refreshing because we both understand what the other is going through.

  • Cardgal18
    2 years ago

    Devin—I feel your isolation too. I still work—I had my dream job and have been forced to step down twice, and take two pay cuts because of my MS. I still work just to get out of the house— lucky for me my job lets me work when I feel like it, couldn’t do it any other way. I work 4-5 hours a week, 10 on a big week! I have been sick for the past two weeks, left the house twice, and once was to go to the doctor. Flip side of working is that it can aggravate my symptoms. I too have friends with MS, but I get sick of myself talking about being sick too! Sick and tired of being sick and tired. Just a vicious.circle on the merry-go-round of MS life! We all just have to hang on to one of the poles and try not to fall, wouldn’t dare to try to ride one of the horses! Love your articles—you really know how to put MS feelings out there and connect with people that way.

  • Devin Garlit moderator author
    2 years ago

    Thanks so much Cardgal18! Whew, I certainly understand that merry-go-round all too well!

  • Littlev
    2 years ago

    Hi Devin,
    I just want to say thank you for your article on Isolation. You are a great writer and truly hit on some really important issues considering this topic. After I read this article I wanted to see what else you have written. And when I did read them I realized I finally saw something that was raw, unabashed and so true! I have had MS for 18 years. I do volunteer work for MS patients/people and I even take call for people who are lonely and depressed, amongst other things. Your articles have given me such a great platform when speaking to these fellow MSrs. Thank you and I look forward to reading more of your articles.

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