As time goes on, we encounter a staggering number of changes, and we feel the growth of our new world on a daily basis. For instance, targeted marketing with eye-popping ads and visuals rolls into our social media feeds based on the products we Googled a few weeks before. Advancements are all around us — yet there’s still so much we can’t see.
So how does this relate to living with multiple sclerosis (MS)? A recent study of 5,300 people with MS found that more than half of participants reported fatigue, tingling and numbness, cognitive issues, muscular weakness, pain, and depression. Now take a moment to find the common denominator within all those symptoms.
The solution? These symptoms are invisible! So many of us have been conditioned to respond to visual perception, but basing our opinions on what we can see makes it easy for us to overlook any complexity in a situation. I know I’m not alone in noticing this, because one MyMSTeam reader recently asked me a very relevant question, which I’ll share today.
Question: How do you explain to people that you’re having a bad day even when you look fine?
Answer: This really is the million-dollar question, and the answer is simple: Although we can’t change the fact that so many of our symptoms are invisible, we can change what we have the ability to act on, which involves how we explain our situation to friends, family, and loved ones.
It can be very frustrating to try to explain exactly how you are feeling to other people. But remember that it isn’t their fault that they don’t get it. We have been conditioned for generations to rely on visual representations of life as opposed to dissecting situations and people as a whole. Friends will base their evaluations 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?
The first step is to be honest. The less we communicate what we experience, the less likely those around us will understand. 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.
I sometimes think of MS as being like the items in my junk drawer. It’s usually somewhere out of sight, and inside it, you can find the most random objects. Dried-up pens, chargers to devices you don’t even have anymore, old keys, and a half-chewed Lego from when the puppy was in basic training. It’s full of clutter, hidden from view. Nobody hosts a dinner party and suggests that the guests get an extensive view of the junk drawer, yet we all have one. Living with multiple sclerosis can present a similar situation. Our symptoms are stashed away, but we are always reminded of them.
Sharing your honest symptoms with others won’t happen overnight — it will take baby steps. It all starts with communication, 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.” Or perhaps “It’s like I’m looking through a piece of aged Swiss cheese.”
These are all great “openers” to explaining ourselves. But if humor and comedy aren’t your strong suit, opt for genuine authenticity. A soft, heartfelt 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 about 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,” André De Shields stated in his 2019 Tony Awards speech, and isn’t that the truth? Small ripples create a wave of change over time.
So take a little risk and take a chance on yourself. Walk a little more toward self-discovery and overwhelming resilience to face with grace, poise, and determination whatever life throws at you. Open that junk drawer and let your loved ones rummage around. They might just be amazed by what they find, and maybe you’ll find more beauty in that pile of “junk” than you ever thought possible.
MyMSTeam columnists discuss multiple sclerosis from a specific point of view. Columnists’ articles don’t reflect the opinions of MyMSTeam staff, medical experts, partners, advertisers, or sponsors. MyMSTeam content isn’t intended as a substitute for professional medical advice, diagnosis, or treatment.