MS: a social disconnect

Disconnect image
Photo by rawpixel.com on Pexels.com

The disconnect started as soon as I was diagnosed, and it started with myself.

Almost from the word “Yes, 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’m OK; it’s MS but I’m OK!!!”

In essence: complete denial for about 5 weeks.

The other, more painful disconnect started with having to tell family and friends that I am now chronically ill, that I might/will get worse over time, and that there is no cure.

I had a large group of friends in college in Dublin, at work and those still living in Belgium while I was happily living in Ireland 2.5 years now, and loved gallivanting around Ireland, pretending I was A-OK.

I so wasn’t.

Two of my friends blatantly told me they couldn’t rely on my friendship anymore.

Nice.

One said she couldn’t cope with my illness.

The other decided that I should stop feeling sorry for myself because I possibly couldn’t be in so much pain.  Never mind that one of my very first MS symptoms was trigeminal neuralgia – often referenced as one of the worst pains known to man. Never mind it literally made me want to curl up and die while banging my head against a rubber hammer hoping I’d pass out long enough to rethink my life strategy on how to stay at work long enough, find the man of my dreams and write a book while studying for a degree in psychology.

That was the very first time I thought, “Oh, I am sorry, I didn’t know my illness doesn’t fit your lifestyle anymore. I will take note of that for future references.”

Sadly, that thought would arise again, and again, even from family members who should’ve known better.

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, stick to daily medication schedules and try to remember 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. Eventually, after working from home approximately 2 years… not being able to work from home anymore at all. All the while I felt the disconnect everyone else was dealing with, was greater than mine. Despite what I had to live with 24h a day, I felt like I was coping better than they were.

My brain is ill. However, 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 illness. We ourselves do not know how we will wake up tomorrow morning, yet our environment expects us to be as we were yesterday, last week or even last year, or 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 any more 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 friends 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 our family 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. Acknowledge your illness in moderation but do not go into 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 realize 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.

Walking away
Walking Away – Photo by Satoshi Hirayama on Pexels.com

If my friends choose not to delve into information about my illness by asking me questions or by (mis)informing them online, then they have a problem, because they discriminate against my illness. I have sent links and info to some in my environment but they chose not to read it. It felt like a slap in my face because later it emerged that, if they had read that particular piece of info, they wouldn’t have treated me the way they did. In the end, it showed they were never friends, to begin with.

If anyone lacks coping skills to understand and accept, then I am more than willing to sit down with them about this. They can ask me what it is like to have MS, but none of my friends ever asked me what it is really like. What goes on in my thought processes? Am I  scared of the future? Of tomorrow?

We fight against non-self-imposed isolation, simply because we have to, not because we want to. I never wanted to lose friends because of something that happened to me unwillingly. I fought hard to make them familiar with what goes on in my life, only to hear that I do not understand them instead of them not understanding me. Ignorance is bliss in their belief system. In mine, you fight hard to support those struggling, in need of a shoulder or an arm to lean on, in need of a chat over a good cup of coffee. But they decided their mind could not handle my brain. I survived though.

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

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© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2013.

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Quirky, tenacious and neurologically compromised female expat living in Ireland since 2002 ◾ IRELAND BLOG AWARDS WINNER - BEST BLOG POST 2018 with '3443 Needles' ◾ Ireland Blog Awards Finalist 2014, 2015, 2017 ◾ MyTherapyApp Best MS Blog for Simplicity 2018 ◾ Everyday Health Top 10 MS Blog of 2018 ◾ Feedspot Top 50 MS Blog 2017, 2018 ◾ Contributor to the Teva MS blog Life Effects ◾ Contributor to the Novartis MS blog Living Like You ◾ Contributor to MS Ireland’s blog MS & Me ◾ Contributor to The Mighty ◾ Guest contributor to MyTherapyApp.com ◾ WEGO Health Patient Leader Award Nominee 2018

15 thoughts on “MS: a social disconnect

  1. 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

  2. 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.

    1. 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

  3. 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!

    1. I read that you were recently diagnosed so fair play to getting out there and blogging about it! You will find our way somehow, if not straight away, then definitely along the path of relapses, aches and pains and sadly, also disappointment. It’s fantastic that you find great comfort in reading about other people who live with MS. There is a very large MS community out there of patients and their friends and families and if you are on Facebook, you will find a huge group out there supporting each other, giving tips and venting frustrations. I’ve blogged about being newly diagnosed myself.

      I know a lot of what is happening to you doesn’t make much sense to you right now, but give yourself time to adjust, and teach others that you are going through an important change in lifestyle and that you want understanding, and lots of support. People will always have their own ideas about what your illness should be like, and that’s where WordPress, Facebook etc come in handy. I’ve found it a brilliant tool to teach my environment about what I am going through and people always respond positively to that. But I’m yapping on here… just remember to take time out for yourself and to rest and relax as much as possible.

      Take care!

  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

    1. 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!

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