Ten years ago (wait, wasn’t it fifteen already?) … I went everywhere. I walked a lot, and I walked fast. My new university classmates didn’t even notice that there was anything wrong with the way I walked until I told them about “The Thing”.
Oh, that first beer we had after those late lectures … And then, naturally, we partied into the night like proper students.
Just like the woman on the trolley bus didn’t notice. She stared daggers at me because I had sat down in the only free seat right in front of her (and I was almost crying with relief on the inside). Back then, my disease was pretty well hidden, a sneaky little thing, except when stress and colds triggered yet another relapse. And when I occasionally went to the clinic to get hooked up to some chemotherapy or carried a disinfected bag full of injection needles to dirty music festivals.
On the other hand … nightclub bouncers always noticed my unsteady walk and, presumably worried about potentially vomit-covered chairs, preferred not to let me go any further.
“How unfair!” I thought back then (and I still think so now), while secretly admiring their dedication to doing their job properly.
Over the years, I became increasingly hesitant as I shuffled through little streets, shopping centres and bureaucratic buildings. But when a stranger first spotted me, any potential stumble, crash or wandering eyes was usually attributed to confusion because, you know … there are plenty of naturally scatterbrained people around.
You can imagine how wonderfully that did wonders for my self-confidence!
The fact that I could barely stand in line to buy my monthly bus pass, that walking in the heat to catch a train made me feel sick, that my blurry vision made it difficult to figure out which trolley bus was going where … those internal battles were invisible to a stranger.
They didn’t notice. They couldn’t notice.
Through all of this, I stubbornly insisted that, apart from my glasses, I didn’t need any additional aid.
After all, I’m doing fine – until I’m not.
And when I’m not, I grab the arm of whichever important walking companion happens to be nearby.
After all, I can see perfectly well – until I can’t.
And when I can’t, I ask some random passer-by for the information I need.
Of course, I admire this fighting spirit of mine and always support it. Still, something about it makes me a little angry …
That feeling of indignity.
The feeling I always had when the world around me gave me that certain condescending look.
The feeling that somehow I was to blame for the way I walked.
Stumbling.
Waddling.
Bumping into things.
The invisible disease became visible
After three years of renting a rollator “just in case”, it happily returned to the pharmacy from its dark corner in our basement, still unpacked and completely unused.
After some serious consideration, this year I finally got myself a sexy red stick, and only then did I discover what walking with a mobility aid actually means.
It means more freedom.
More independence.
More confidence.
It means keeping your eyes open wider (and your mouth too, because you haven’t seen a world like this before).
It means having more time to look around and take everything in (no, bare ankles in the middle of winter are still not cool).
It means stepping more carefully (and avoiding frogs that have been flattened by bicycles).
It means doing things more consciously (keys and coins no longer magically fall out of your handbag).
It means walking through those doors with more determination, knowing that there is something waiting for you on the other side.
And then you meet exactly the same completely unfazed receptionist.
It means …
That feeling of dignity.
But it also makes your invisible disease visible.
An invisible disease suddenly becomes visible from outer space because there you are, holding a stick that tells everyone you have trouble walking.
But …
Did multiple sclerosis really have to chew its way this far into me before elderly people finally started giving me their seats on the trolley bus?
Did MS really have to damage me so much over the years before the shop assistant at the little Mercator started carrying my groceries to the checkout before I had even properly made it through the door?
Did MS really have to nibble away at me so much before people at administrative offices, social work centres and banks started looking at me much more kindly, much more respectfully, much more HUMANELY?
And on the street. On buses. In shops.
(I’m leaving the disability assessment committee out of this.)
Because young people don’t get sick
Because young people are bursting with energy and life. Because young people are healthy.
No, I know. It’s not that black and white.
Of course I had plenty of positive experiences before my sexy red stick, and of course I’ll have plenty of negative experiences after my sexy red stick.
But one thing is certain:
More solidarity. More tolerance. POR FAVOR.
You don’t know what someone is hiding behind their beautiful, made-up, carefully brushed appearance.
And you don’t know what someone is hiding underneath their neglected, smelly, ragged clothes.
Indifference and intolerance are not chronic illnesses, even though they are invisible.
What does it mean for a disease to be invisible?
The term “invisible illnesses” covers a whole range of conditions that don’t show on the outside and therefore aren’t easily noticed by other people.
Invisible illnesses include chronic conditions such as arthritis, diabetes, fibromyalgia, multiple sclerosis, lupus, Lyme disease, celiac disease, migraines, cardiovascular diseases, cancer …
Okay, stop.
Allergies, various food intolerances, infertility, endometriosis, Crohn’s disease, atopic dermatitis …
Is the list ever going to end?
No.
Add depression and a whole bunch of other mental health conditions to it as well.
An invisible illness comes with a whole bunch of invisible symptoms.
I’m speaking mainly from the perspective of my multiple sclerosis. Every day, or at least from time to time, I deal with:
- fatigue
- numbness in my legs and arms
- tingling throughout my body
- dizziness
- reduced muscle tone
- sleep problems (insomnia and restless legs syndrome(!))
- spasticity (spasms are cramps)
- heat sensitivity
- light sensitivity
Balance and coordination problems are probably pretty damn visible symptoms, too. Unfortunately, we all know whom people would rather blame them on …
People with invisible illnesses face misunderstanding and additional stigma.
Besides dealing with the symptoms themselves and fighting for a good quality of life with a chronic illness, a person also has to deal with other people’s lack of awareness, and sometimes even their criticism and judgment.
We are far too quick to believe only what we can see.
Or, perhaps more accurately, what we think we can see.
So, is it really our responsibility to explain the state of our internal organs to a stranger on the bus?
Maybe explain that we have just spent several hours hooked up to an IV and that the medication has left us even more exhausted than usual?
And would they even believe us?
Sometimes it is difficult to explain your illness even to people close to you: neighbours, colleagues, friends.
It takes courage.
It takes the ability to express yourself.
It takes a lot of knowledge.
[Gran Canaria 2020]
Let’s talk. Let’s raise awareness. Let’s be annoying!
With my own little attempt at being annoying, raising awareness and encouraging conversation, I mainly want to point out one thing:
A person who is smiling and in a good mood does not always reflect their actual condition.
A compassionate question to anyone, with or without an illness, is simply:
“How are you?”
“Oh, but this person clearly enjoys her life! She takes life by the horns, travels, socialises, eats well. She probably isn’t suffering that much. And she can stay at home all day! Isn’t that the dream?”
No.
It isn’t.
There is a reason she is at home.
Enjoying life is a matter of perspective.
And when someone with a disability parking permit parks in a disabled parking space, there is a reason for that, too, whether their illness is visible or not.
Disability parking permits are not handed out by local authorities just because someone has a pretty face.
“But it’s all in her head!”
Well, “it’s all in our heads” probably isn’t quite true.
What is usually in our heads is the will, the optimism, the gratitude, the despair, the sadness, the anger …
Our attitude towards the world, things and life.
MS itself is also in our heads, but in a slightly different way.
Physically.
Inside our brains, where it has left its lesions and scars that cause dizziness and fatigue.
Before you ask the next question …
No, resting will not magically make me feel better.
A hundred and one things affect how I feel.
The weather does, even though that may sound horribly superstitious.
Heat does.
A common cold does.
Yesterday’s activity does.
Even a hangover does.
Yes, people with multiple sclerosis like having a glass of wine with dinner, too. You know.
Or two.
Stress-reduction techniques such as meditation, yoga, breathing air and filling your home with the mysterious scent of palo santo are all perfectly good ways to relax.
(Palo santo really does smell beautiful and mysterious!)
They are not-fucking-medicine.
The eating-air thing was a joke.
Oops. I’m getting grumpy.
But honestly, anyone would be if this whole thing about an invisible illness becoming visible only so people would finally notice it and start paying attention wasn’t already completely bizarre.
Shouldn’t every person understand that their whole world can turn upside down at any moment because of one diagnosis or another?
Shouldn’t every person understand that everyone is hiding reasons behind the way they appear in society, whether those reasons are visible or not?
Shouldn’t we all simply enjoy being kind and supportive towards one another?
Why do we always have to invent our own nasty theories about the lives of other people on this planet?
During the first few years, I mostly cried, felt confused and labelled strangers as unfair.
“Maybe they weren’t, Darja! Maybe they had their own story about why they behaved the way they did.”
Now I understand that I’m not the only one dealing with this.
So let’s be mindful.
Let’s be empathetic.
Let’s pay a little more attention to the people around us.
Let’s help.
Let’s be more tolerant of one another.
Let’s listen.
Let’s make the invisible symptom “fighting other people’s lack of understanding” disappear.