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