MS: a social disconnect

“Sadly, I am learning that having MS creates a huge disconnect with people. I find myself in a non-self-imposed isolation and I think it is because our disease affects us so – mentally and physically. We have lesions on our brain, which leaves our nerves literally raw and exposed. It affects us daily in how we process not only our own thoughts, actions and emotions, but also those whom we interact with on a regular basis. It greatly affects those around us, as they do not have the knowledge, coping skills or understanding of the intricacies of MS. Nor, do some people want to wrap their brain around it. MS greatly impacts the dynamics of any relationship we have. Living with MS, woefully, is not easy for the patient or our loved ones. I recognize this new paradigm which still confounds, confuses and saddens me.” (By Sydney Renee Walker)

There are many blog posts about multiple sclerosis, and from reading and following some, it is clear that MS is not only something that weighs on its host quite physically, but the burden some MSers carry, is put there not by their illness, but by how people react to them having MS.

In my case, the disconnect started as soon as I was diagnosed, and it started with myself. Almost from the get-go when hearing, “Yes, you have MS,” I felt like stepping back from myself. This wasn’t me. This wasn’t happening. I would show others that this is just not me. I am not hearing right. I am imagining this… thoughts like these were rushing through my mind. I even texted my then-boyfriend saying, “I am OK; it’s MS but I am OK,” followed by five weeks of total denial.

The other, more painful disconnect started with having to tell friends, family and colleagues that I am now chronically ill, that I will get worse over time and that there is no cure. Some blatantly told me they “couldn’t cope with my illness,” while others told me years later, and colleagues said, “It must be nice being on sick leave that long, it must feel like a holiday!”

In the beginning, there were the obvious changes in my life: not big, but big enough to question my future and my future relationships. I had to learn how to live with MS, having to learn daily medication schedules and sticking to GP and hospital appointments.

I also had to ask my employer if I could please work from home. When it finally happened, a year had passed already, a year I felt I didn’t have. Eventually, after working from home approximately 2 years and under new management and increased demands to go to the office instead of work from home, I felt that this was the end of my career. Without this increased demand, I would be fine for a good while longer. All the while I felt the disconnect everyone else was dealing with, was greater than mine. Despite what I had to physically live with 24h a day, I felt like I was somehow coping better than others were.

However, I do realise that my brain is ill, and because ours is an invisible illness, our environment might “forget” we are ill, and not with a mere cold, but with an invisible, incurable and degenerative, and therefore progressive illness. We ourselves do not know how we will wake up tomorrow morning, or how we will feel in an hour, yet our environment expects us to be as we were yesterday, last week or even last year, and sometimes even as before MS started causing havoc to our bodies.

Therein lies the disconnect: the way others want me to be, and me not being able to keep up. How many of us have pretended to be well enough to walk another 500 metres? How many say they are OK when they feel pain in their limbs, their eyes and in their soul? How many say they will be able to go to work when they were awake half the night because of pain?

Unwillingly we are put in a non-self-imposed isolation; we are put there by our illness, and quite often by the outside world. Our mental functioning is now processed differently because of our illness. We are just not the same person anymore people once knew.

If our environment would be able to see our exposed, raw central nervous system, showing damage that sends information only half or not at all, would we still be touch with those who dropped us like flies? Would they finally accept that yes, we are quite ill and “now I realize how ill exactly?” Would they have played with our daily life simply because we have nothing better to do than wait around for them to come and visit us? Would they emphasize more how important we are to them and how much we need to look after ourselves?

True, you cannot display how ill you feel or are every minute of the day because some days you just have to get on with life and not wonder about the future. It’s all about these few sentences: acknowledge your illness in moderation but do not go in total denial. Realize that you need to rest more than other people do in your environment. Do let others help you and do not be afraid to ask. Do not deny your diagnosis but try to defy your verdict. Tell yourself that MS may have your brain, but it will never have your soul.

I now realise that with that verdict, I learned more about myself than I ever would have if it were not for MS. People may willingly put me in isolation because I’m “not the same anymore as all those years ago,” at least I broke free from the restraints they put on me on a mental level.

Because of the complexity and unpredictability of MS, others not choosing to be informed can turn out to be a disadvantage. Anyone in my environment knows I’m happy to share my life with MS with them. It’s all about raising awareness and trying to undo discrimination before it happens.

So yes, we fight against non-self-imposed isolation, simply because we have to, not because we want to. We don’t want to lose friends because of something that happened to us unwillingly. We fight hard to make people familiar with what goes on in our life, but to some, ignorance is bliss in their belief system. In mine, you fight hard to support those struggling, those in need of a shoulder or an arm to lean on, those in need of a chat over a good cup of coffee. But when others decide their mind can’t handle our brain, we do survive.

In the end, MS will always be an illness that confounds, confuses and saddens, but at least we know: our disconnect is as much theirs.

© WVE and Ireland, MS and Me, 2011-2013. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to WVE and Ireland, MS and Me with appropriate and specific direction to the original content.


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  4. As a sufferer of two different degenerative diseases (although neither as serious as MS) I can relate to your experiences of self denial (“So what? I can keep carrying on.”) and the ‘disconnection’ by others (“Well while you’re having difficulties coping, we’ll have to let you go. But do get back in touch when you’re well enough again to work full-time.”)
    Imagine if all we who suffer these debilitation conditions all worked from home for the same company. My stars, wouldn’t we rock the world’s foundations!
    Thanks for an informative, frank and meaningful reveal of your experiences


    • Billie says:

      Thank you so much for your comment! I really appreciate it!

      Yes, wouldn’t the world be so much better if we all worked from home for the same company, we’d be the strongest bunch of all :)

      I strive to be frank because I’ve come to realize that quite often the soft approach does not help people understand what I’m going through. Unfortunately some refuse to understand what you’re coping with, and my approach would be “Well if YOU have trouble dealing with MY illness, what do I have to say then when I am walking around with my illness 24/7?!?” It’s been a frustrating basically since being diagnosed 8 years ago, and I still experience others being unable to deal with my illness whereas I feel I am coping well and when I make much less of having MS than they do. It seems to be an upside down world, doesn’t it?

      Thanks again and please stop by to comment whenever!


  5. reoj1983 says:

    Oh my gosh! Thank you for that post. I am just now facing the realization that though I swore up and down that I could work from home as a grant writer, I have such pain in my hands, it’s hard to type and I can’t keep up. Now what? I have no idea. I pray for guidance and that I may somehow see Gods plans for me. I find great comfort in reading about others who suffer and survive the same illnesses as I. Thank you!


  6. Thanks for this post. I am undiagnosed but I already feel down about what my future might hold, particularly if I lose my sight. I am only 25 years old and at the start of what I hoped would be a fulfilling career, which may now never happen. I think the idea of not being a useful member of society is what scares me the most. I am a natural ‘helper’, I like and want to help others and be useful.


    • Billie says:

      So sorry to read that you are still not diagnosed. It must be awfully upsetting being ill and not knowing what, how, when etc. Have you considered double-checking with different neuros and/or GPs? Or get a MRI scan done privately?

      It’s so important to try and stay optimistic, and I know that is such a cliche but it really helps not over-thinking things. Been there, done that kind of thing and by god it only made me feel worse mentally as well as physically. Stress is such a trigger for different illnesses. When I stress, bang… there’s the tension headache, or eye pains or fatigue (which is already bad as is). Meditation helps learning to alleviate stressors but right now that’s not what you want to hear, I know (Again, been there, done that). What you need is a proper diagnosis so I will keep you in my thoughts and hope that you get definitive answers soon. I won’t be online much over the next 5-6 days or so but I hope you will feel a little better and hopefully with news about what is causing havoc.

      Take care x


  7. Hi Billie, I just wondered if you could point me in the right direction on your blog to the MS videos please? You had a post with a few really good videos on where the 2 ladies had MS, the lady with short grey hair. I’d really like to share them with people but not sure where to start looking. I hope you have a lovely day Su xxx


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