Imagine, you’re stuck with me in an utterly crazy, hilarious episode of The Big Bang Theory. Let your imagination run riot, especially since this post has some gender reversal role-playing added to it.
There is the ditzy Penny-type of person who thinks along the lines of “Not seeing = questioning = perhaps, possibly, maybe believing”. She thinks it’s hard to value the worth of something when it’s not visible, but given time to learn, she might just try and see things your way.
And then there is Leonard, who knows that he’s not on the same scorecard as some of his contemporaries. He knows that there is truth in the world, and more importantly, inside him. He says, “Stop questioning me. It exists, I have tangible proof, and I will demonstrate it to you until you let go.”
That Leonard, is me, with a clear mind and having taken ownership not only of his past but of his present also. That Leonard knows that he is not only chronically ill, but also chronically fabulous, yet he still has to deal with people who need a little more convincing of that fact.
The Penny-thinking person continuously wants you to prove you actually do belong to the realm of hospitals, GPs, pharmacies, and whatnot. “Sure,” Leonard thinks, “everyone’s allowed to think what they like, but what I find hard to stomach is when those doubts have to be proven time after time.”
How do you deal with it, then? Leonard might tell the Pennys of this world as empathically as he possibly can:
“I understand, I do. It might not always be easy for you to understand the illness I now live with. You knew me before I became ill and have no idea how to behave around me now. Perhaps you want to stay away, or maybe you refuse to see what that illness turned me into.
Let me assure you, though, I feel the effects of my condition all too much. Having you doubt me hurts more than some of my symptoms hurt me, and that is saying a lot.
On days where I am not doing so well, I still fight to feel better, but what I want you to understand is that I need you, just you. Not you talking behind my back, questioning or being annoyed when I have to cancel something, or when I stay away from social media for a few days.
Navigating the world with a chronic condition is touchy at best. If you continuously question my motives despite knowing me for years, how do you think I feel when it’s my health that is upside down and left of centre?”
Sadly, there are many people with a Penny-mindset in the world who, for very selfish reasons, refuse to accept that you are ill because, in that very moment, your illness doesn’t suit them very well. Some believe that you enjoy being ill and therefore, that you are wallowing in self-pity. To stop them judging you, they need you to provide proof. Constantly. Even better, they want you to just give up the Hollywood theatrics.
Leonard, hurt and annoyed, would say:
“You are so wrong. I am not enjoying my illness. At all. Stop thinking what you want my illness to be!
Despite chronic pain and fatigue issues, I am making the best of my life, and I am doing everything possible to be the best version of myself as I can be. All I ask of you is some understanding of what I am going through, and know that every bad day is only making me stronger. Some days, though, I want you to hold my hand or hug me and tell me that everything will be OK.
In an ideal world, people with invisible conditions or disabilities shouldn’t have to prove anything. People should take you at face value and believe you when you say you are unwell. You have no idea how frustrating it is to have to clarify myself over and over again.
Living in that very reality, I realise that some things now matter less than others, and I just want to get on with life without having to explain why I am the way I am, MS idiocy or not.”
If the shoe was on the other foot, would those who question you behave similarly?
Nobody – absolutely nobody – has the right to belittle you because of something that was out of your control. After all, you never asked for an illness that is not only invisible but also fickle.
My late GP (bless his soul) always said, “Willeke, real friends and people who care about you will always show you that they care. With them, you can drop the Superwoman mask, show them what it is you’re dealing with on a daily basis, from the most mundane thing to the tiring neurology checkups.”
Leonard-type of people might reply:
“I am sick and tired of tiptoeing around people because they are peed off because “I am just not the same anymore.”
People who have no idea at all about life with an illness like MS (or any other kind of illness) judge, hurt and abuse your trust. At some stage, I will stand up and walk away from them because I question their lack of compassion and patience as well as their unwillingness to see things from my side.”
For example, you notice that one of your friends lost weight and looks tired. You also see that he or she is staying away from social outings. They tell you they have been diagnosed with cancer. However, you don’t question the validity of that diagnosis or their symptoms. They receive treatment, and if or when they are lucky, their cancer is cured. After all, cancer research is advancing daily, which means that more and more people will survive as time goes on.
However, when someone with a relatively invisible illness like MS, for example, needs to cancel plans because they forgot an appointment, certain people feel the need to quite insensitively question the motive for scrapping the date and wonder if you’re just lazy. If you’re in a wheelchair, people immediately see you as a person with disabilities, which means that you are excused instantly. Take away the walking aid, and you and your illness are called into question.
Not at all.
Looking OK ≠ feeling OK ≠ faking symptoms or much worse, faking an illness.
I don’t want to stoop as low as those who have shown me their ignorance. As an exercise in friendship, I can ask them how they would feel if they were ill and I was applying the same ignorance to our friendship? Would they be the first to cry wolf? Or would they say “I over-reacted big time so please accept my apology?”
In being real, I am still defiant and still happy-go-lucky. Still the same. If you tickle me to death, I will still find just revenge. I still dream of living in Ireland despite living here for 14 years. I am the same as I was on the day of diagnosis. Perhaps a little wiser, older and goofier, but not a lesser version of who I used to be.
In being real, I have accepted my failures, admitted where I went wrong.
I keep loving life and everyone in it.
But, please, do accept me as I am.
©Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2017. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or 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.