As time goes on, we encounter a staggering amount of changes. Societal evolution, environmental factors, medical advances and so on. Everything around us is changing dramatically. Even from just 10 years ago it can often feel more so like a span of 20+ years. We are now more than ever in a chapter of growth and transformation. I mean, we’re sending people to the Moon now. We feel the growth of our new world on a daily basis. Targeted marketing, influencers, the fact that you mentioned picking up a new patio set to your spouse and now patio sets are being suggested through your Amazon account.How did Alexa know? Advancements are all around us- yet I question how the fundamentals of psychology are advancing with us? Now I won’t go into a complete psych tangent because that is not why I’m here. I am a Writer and Patient Advocate for the Multiple Sclerosis Community. So why am I gabbing about worldly technological evolution and the changes it is having on society’s psychological breakdown? Let me tell you.
We live in a world that is heavily reliant on visual stimulation. Red is a popular marketing color because of psychological stimulators that can help identify the feeling of excitement, action, energy or even passion. Same with the colors yellow and orange. Think of your last road trip. How many billboards or Fast Food signs do you recall? I guarantee you 90% of them were within that specific color palette.
So how does this relate to living with Multiple Sclerosis? On April 27, 2017 a National Survey was performed through (Health Union & The Multiple Sclerosis and Related Disorders Journal) on those living with Multiple Sclerosis-specifically pertaining to the misdiagnosis and struggles finding effective treatment for the disease as well as Relapse prevalence, symptoms and Health Care Engagement. The study was able to show a breakdown calculation of symptoms that will later support my theory in this column. It was found that out of the over 5,300 participants, 87% reported fatigue, 75% reported tingling and numbness, 70% reported cognitive issues or “cog fog”, 64% reported muscular weakness, 55% reported pain, 53% reported depression and 30% reported vision problems. Now, take a moment to find the common denominator within all of those symptoms.
THEY ARE INVISIBLE.
If they weren’t, then the study would show that 38% of patients developed the ability to cluck like a chicken and 12% grew a tail. But that’s not the case here.
Society has been conditioned to respond to visual perception and the science behind this has only developed more with time. Visual perception has made it very easy for us to overlook any complexity in a situation because we are hyper focused on “what we see” rather than what we feel, hear and smell. See where I’m going with this yet?
How do you explain to people that you're having a bad day even when you look fine?
I hear this question from members of the MS Community so often that if I had a dollar for every time I heard it- I would be writing this article in a grand castle surrounded by a moat full of majestic swans and wish granting Koi Fish. I get it. It’s the million dollar question. And the answer is simple. While we can’t change the fact that more than 62% of symptoms in MS Patients are invisible, we can change what we have the ability to act on- being how we explain our situation to friends, family and loved ones.
It can be very frustrating explaining to someone that may not know much about MS exactly how you are feeling. Know this- it isn’t their fault that they don’t “get it”. Again, we have been conditioned for generations to rely on the “visual” representation of life as opposed to dissecting situations and people as a whole. Your friend will base their evaluation on your physical appearance unless you put off showering for a few days and have failed to run a comb through your hair. So what can we do to soften the gap of perception?
GET HONEST.
The less we communicate what we experience, the less likely those around us are to “getting it” in this case. Honesty is the best policy. This, I will admit, requires quite a bit of humility. No, it’s not easy to admit the most difficult parts of yourself.
Think of MS like a junk drawer. It’s usually hidden somewhere out of sight and inside it you can find the most random of objects. Dried up pens, chargers to devices you don’t even have anymore, old keys and a half chewed lego from where your Pup was in basic training. It’s full of a wide spectrum of clutter, hidden from view. Nobody hosts a dinner party and while they offer their guests a tour of their home, they make sure to give an extensive view of the infamous “junk drawer”- yet we all have one. Whether it be a drawer, a closet or the trunk of your car- we all have areas we stash away our junk. Living with Multiple Sclerosis is very much the same. We can’t see our symptoms, they are stashed away but we are always reminded of them. Just as those not living with MS stash their junk- we all share a common thread being, that WE ARE HUMAN.
So how do we implement change in the algorithm visual psychology has had on society? Baby steps of course. Rome wasn’t built in a day. It all starts with communication, explanation, humility, bravery and definitely some humorous metaphors. “You know that feeling when your foot falls asleep? Well apparently my limbs feel like taking a 24 hour nap daily. It’s sort of like that.” “Apparently my legs failed to RSVP to the party.” “It’s like I’m looking through a piece of aged Swiss cheese.” - These are all great “openers” to explaining ourselves. This is not to say that all of you are going to be comically inclined. Humor just happens to be my most established defensive mechanism because… it just lightens the mood. Wacka Wacka. But if comedy is not your most gracious approach, opt for genuine authenticity. A soft heart felt chat about anything considered to be difficult is typically well received.
We may not be able to flip a switch and suddenly change the way society thinks in the aspect of visual stimulation and perception, but we can start by making little changes in our approach to hopefully widen the perception of what disability looks like.
“Slowly is the fastest way to get to where you want to be.”- Andre’ De Shields expressed in his 2019 Tony Award Winning Speech.
And isn’t that the truth. Small ripples create a wave of change overtime. So take a little risk and take a chance -on you. Walk a little more towards self discovery and overwhelming resilience to face whatever life throws at you with grace, poise and determination. Open that junk drawer and let your loved ones rummage around. They might just be amazed by what they find and maybe, just maybe, YOU might find more beauty in that pile of “junk” than you ever thought possible.
~ BQ