I could call this a ‘letter to society’s ignorance’.
I could just as well call it a ‘letter to my stupidity’.
While I will ponder about a suitable title for this piece a bit longer, the topic is so well-known and dreaded, it is part of the dark fabric of life.
My biggest pet peeve in life is ignorance, and its birth could stem from an event eleven years ago – a few weeks after my diagnosis – or it might just as well have tumbled from my fingertips earlier today. Ignorance is everywhere and strikes any time.
Sadly, ignorance is everywhere and strikes any time.
In short, this perhaps blunt-sounding post has been 10+ years in the making. Now, that is an awful lot of ignorance.
Since 2005, ignorance by society has played a larger part in my life more than I ever wanted to acknowledge, so this post should have been completed years ago. Either way, a decade later, dishonesty and disloyalty still sound, taste and feel the same.
Betrayal is when my illness is used against me to make others look better.
Betrayal is when my illness is used against me to hide other people’s mistakes.
Many others like myself who live with an invisible chronic illness as well as with chronic pain, continue to live with smug and often irrational, nonsensical behaviour of a judgmental society that quite often refuses to inform itself about your illness.
Oh, people will stalk you on Facebook on their smartphone, but do not ask them to find unprejudiced, trustworthy websites to learn something about your condition on that very smartphone. Quite often, they “will do so when they have time,” despite having their phone in their hands 50 times a day.
If people would at least show some respect, many people with chronic or terminal illnesses would live easier lives. After all, knowledge is power.
Consequently, if I were to add a tag cloud to this post, it would list the words chronic, pain, invisible symptoms, fatigue, trigeminal neuralgia, ignorance, neurological, degenerative and illness.
In laymen’s terms, my disease could be tagged as “I don’t think he/she is that sick because I can’t see symptoms.”
In medical terminology, my illness is called multiple sclerosis. Despite the above tags, I could, therefore, give this post many other negative sounding titles.
I won’t because I do have some dignity and pride left, even after eleven years of people betraying love and friendship so they can make themselves feel better.
It begins with dehumanising the person who is ill; you become “someone sick” rather than characterising people as “Willeke-Maya, a cheeky, fearless girl who happens to be chronically ill”. But, there is still a person under that medicine-enhanced body armour. They are still the same and they still like all the things they used to love before their diagnosis.
Showing continued disregard by dehumanising and therefore generalising a loved one’s illness drives a wedge between you two. As an example, as a judgmental community, some seemed to believe that I happily chose to retire from work age 36.5.
I took me a year and a half trying to decide if I should, if I could and if I really needed to.
But, when your neurologist, your primary care physician, your occupational doctor at work and your close family and friends say you really, really need to retire for the sake of your future disease progress, you kinda need to.
However, to this day, having to retire still annoys me so much that I keep adding the “0.5” after the “36” to show that retiring that young in life wasn’t easy.
It so, so wasn’t easy.
I retired six years ago.
The 0.5 years will stay put until further notice. End of.
Following society’s line of thought, so, it also eagerly believes I now happily choose to sit at home every day, have long lie-ins and stare at dreadful daytime television. That I choose this sedentary lifestyle over missing out on family days, friends’ dinner parties, travelling and society’s big festivities.
Newsflash… I’d rather eat sticks and stones than willingly choose this kind of lifestyle.
And yes, I have cried, howled, been distressed and in total need of help and understanding when I was in so much pain I wanted to go to sleep and never wake up ever again. I’ve also been inflamed, rejected, hurt and shocked about some people’s ignorance towards my illness in my family. It felt like huge punches landed in my stomach knowing that the most precious gifts in life were taken away because of the consequences of an unfortunate diagnosis.
Now, humour me for a minute. Do you honestly believe that if given even the slightest chance to return to the old me, you would still believe I wouldn’t take it? That I would pick my current, totally sedentary lifestyle over hillwalking and travelling, dancing and be a workaholic again?
If you truly believe this to be true, it says a lot more about you than it says about me.
MS is invisible up to a certain degree, yet I made sure that my illness wasn’t a secret. Ever since my diagnosis, I have involved the right people at the right time in journeying with me along professional, neuropsychological and medical paths. Sadly, that didn’t stop MS progressing, and relapses happened when I should have been more mindful of my energy and pain levels.
Eleven-years-post-diagnosis, MS fatigue and trigeminal neuralgia are still my enemies. I have slept for 16 hours straight and fell asleep at the most inconvenient times and places. I have walked like an 80-year-old veteran in high heels and I have stopped talking during the liveliest and funniest discussions because each word sent stabbing pain through my face.
This is no-frills, no-thrills MS.
This is not an excuse.
Yes, there are many concealed symptoms related to multiple sclerosis, but let me tell you one last thing. Just because you cannot see symptoms, doesn’t mean they’re not there. In the past, I have written and talked about the impact of facial pain and MS, but I have done so in detail many times before.
I shouldn’t have to do it ever again. And again.
In the end, I have apologised for being ill, explained what was going wrong in my brain, and hoped and waited for understanding for years.
Do not forget, however, that I am still the CEO and master of my brain, mind and memories.
Do not tell me I said, did or didn’t do such and such. I still know what I can or cannot find in my mind. If I can’t remember something, I will tell you. If you try to make me believe I said, did or didn’t do something when I can quite clearly remember, I will gladly draw a line under my love or our friendship.
Abusing anyone’s illness will only get people as far as the door bell. It will never get them any further again.
“I will not let anyone walk through my
mind with their dirty feet.”
© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2016. Unauthorized use and duplication of this material without express and written permission from this blog’s author and owner are strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.