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Isolation & MS

Isolation & MS

I know that I have probably touched base on this in the past, as many others most likely have, but I wanted to bring up the issue of isolation & MS. I feel that this should be categorized as a ‘symptom’ of MS because it can be very common after being diagnosed.

Noticing distance in friendships

When I was first diagnosed and learned about the disease, I started to feel isolated… not that I was in reality, but I had some people here and there just distancing themselves from me. So, I then started to push people away because it’s always easier to leave than be left, for me at least.

But my thing is when I was reading over all the material (what to expect, what symptoms came with an MS diagnosis), it didn’t prepare me for the isolation I felt, which was worsened by depression.

A 12-step program for being diagnosed

I almost feel like there is a ’12-step program’ of being diagnosed, in a way. I dealt with steps of denial, anger, depression, acceptance, etc. Except for the fact that we have no control over the whole relapse issue. Well, we do in a way, but not COMPLETE control. It should also be known that isolation can come and go… just like MS symptoms.

One of the big differences with isolation compared to other MS symptoms is that there is no possible treatment for it, at least, not directly. It’s not something that people like to bring up, think about, or even speak to their doctor about. I didn’t speak to my doctor about it at first because I didn’t feel that it was something that was ‘important’ in regards to my illness and managing it. I was wrong.

Easier said than done

Some people would say, well if you’re isolated, talk more… or socialize more. Now let me just say that it’s easier said than done. I may want to talk more and socialize more, but I won’t. Like when I was first diagnosed, I knew that I needed to socialize and really try and bring myself out of the isolation, but I was scared. I didn’t know with whom I could socialize, or the topics that I wanted to discuss.

Isolation is unpredictable

Isolation isn’t something that can be fixed and then never return. It’s just like MS… there is no predicting it. It is present throughout different times/stages of your illness, not just when you’re first diagnosed. For instance, when I’ve relapsed… I’ve gone back to isolation. Yes, I purposefully isolated myself. Some people have asked me why, and it’s because for me, at the time, it was safer. I was safer to isolate myself than to be judged, looked at differently, or just have people talk about me behind my back.

I saw this quote a long time ago, and I wanted to share because it’s a bit fitting for how I have felt at different stages in life since my diagnosis. It reads: “Sometimes you put walls up not to keep people out, but to see who cares enough to break them down.” ~Socrates

You aren’t alone

So, if you are feeling isolated, just know that you aren’t alone. Do we cause the isolation ourselves at times? Yes, but that’s most likely because we’ve been burned before and want to prevent it from happening again. Or maybe we’re making ourselves isolated due to depression, anxiety, stress… there are many reasons why I have isolated myself in the past, and I’m sure there are other reasons for anyone else who has done it before.

I don’t feel like it’s a bad thing to kind of go on a ‘mental vacation’ for a night, etc. But be careful about how far you isolate yourself and for how long, because you don’t want to push people away who really truly care about you.

Until next time…

xoxo

Ashley Ringstaff

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

  • JustsayN
    3 years ago

    Hey Ashely. Just need to vent. I HATE having to be gracious when being left behind. Like when you know your wheelchair will not navigate sand at the beach. I dislike not being impulsive..able to go on the spur of the moment…like everything in life now has to be planned from A to Z. Last (then I’ll stop) I really HATE n ot being confident in my abilities..hell mostly I don’t know what my abilities are….recently want to try snowmobiling but it was a “NO GO” after contemplating all of the pro’s and cons of trying.

    Also hate all the “special” arrangements I need to make. Maybe I’ll go on the cruise this year.
    Thanks for listening

  • Ashley Ringstaff moderator author
    2 years ago

    Hey! Speaking of cruise, they have a cruise just for patients with MS, through the Multiple Sclerosis Foundation. https://msfocus.org/About-Us/MSF-News-Articles/40
    Just a thought!

    xoxo

  • clsuhre
    3 years ago

    Time of life matters, too. I am 56, dx at 45. We moved to a new state five years ago, and it’s been a challenge to get out of isolation. I left it all when we moved – friends, volunteer activities, hairdresser, neighbors – in exchange for a live-in marriage. When you don’t have kids in school, you don’t meet the neighbors, or other families at the bus stop, or other parents in the PTO. Between the “meeting-new-friends train” having departed and MS limiting how far I can go even on my street, my social life is VERY small. I feel bad for letting my husband think he is my only link to the outside world, but he really mostly is. I have joined a couple musical groups that accommodate my limitations, so I’m not completely alone.

  • Ashley Ringstaff moderator author
    2 years ago

    It’s so difficult to make new relationships, because you don’t know how they will respond to you having MS in the first place.

    Wishing you all the best.

    xoxo

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