“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 word “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.” Total denial for about 5 weeks.
The other, more painful disconnect started with having to tell friends and family that I am ill. Some friends blatantly told me they “couldn’t cope with my illness,” others told me years later that “I’ve never seen you this tired before,” meaning that I must be putting on quite a show and then others just walked out without reasons for doing so at all.
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 had to ask my employer if I could please work from home. Waiting for a year before it finally happened and eventually not being able to work from home anymore. Yet 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.
Our brain is ill, and some have lesions on their spinal cord as well. 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, or before MS started causing havoc to our bodies. Therein lies the disconnect: the way others want us to be and us MSers 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. 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 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 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, which 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 that 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. 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; on the contrary, 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.
It will always be an illness that confounds, confuses and saddens but at least we know: our disconnect is as much theirs.