Invisible Struggles: The Hidden Battle of MS
MS is a struggle internally and externally. It’s a silent, mental and emotional struggle that creates so much inner turmoil. Sometimes MS is an overt physical struggle when each passing step feels like running a marathon and our limbs feel dragged downwards by a crushing force of fatigue. Sometimes the silent inner symptoms have to be revealed on the outside in a bid to get help. It’s a contradiction that I’ve always struggled with. It makes me feel weak asking a stranger for help because it leaves me susceptible to their reaction and their willingness to help. Asking for help also leaves me open to the misconceptions about MS and some of the negative stereotypes that might be lurking below the brim.
The Dilemma of Asking for Help
Let me share with you one such example. I was recently fortunate enough to visit Birmingham for a work conference. It was an action packed day with a 4am alarm clock to make the 6.30 am flight. Thank you Michael O Leary for the fluorescent yellow and blue wake-up call as I blearily paid an exorbitant price for a bottle of water. The morning trundled along with introductions, tea and some interesting talks. I hoped to check into my room discreetly during our lunch break and disappear during the tail end of the afternoon talks for a much needed rest – the perfect excuse for an Irish Exit! As I approached the reception desk, I felt that familiar feeling of dread and imposter syndrome.
As someone who looks visibly well, I struggle with perceptions of my MS. My MS is never enough. I’m never visibly unwell externally to be taken seriously while rarely feeling well enough internally to forget about my symptoms for just a moment. To the outside world, I look fine and I’ve lost count of the amount of encounters that I’ve experienced where my MS hasn’t been validated or considered. This experience was one such occasion. Even though I provided proof of my MS and pleaded for the chance to gain early access to my room, it was reiterated that the conference was a group booking and we would all receive room keys at 5pm. I went back to the conference feeling dejected and miniscule. Allowing someone on the outside to gain access to the pain on the inside is tough. It’s even more challenging when the pain is dismissed in spite of proof.
Kindness When You Least Expect It
However, help can come from the most surprising of places. As I searched for one of the conference organisers, I crossed paths with one of the previous speakers and explained my situation. The perfectly-coiffed CEO type fixed my problem in a jiffy and off she went with a click clack of her perfect stilettoes. As I settled into bed and drifted off to re-runs of The Golden Girls (it’s my guilty pleasure!), I thought to myself about the importance of kindness from strangers.
We each have the power to make someone’s day. Hold a door open for a stranger, offer to pay for a fellow passenger’s bus fare if their leap card is in the red or stop and say hello to a neighbour. We really have no idea what everyone is enduring behind closed doors. Instead of being the unhelpful hotel employee, we each have the power to be the Good Samaritan…with a sleek blow dry and fabulous heels!
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