Today is World MS Day; a day to draw awareness to the condition that affects 23,000+ Australians (and 2.5 million people worldwide). There is no cure (this year at least). Three quarters of the folks living with MS are women. The majority of whom experienced their first symptoms between 30 and 35.
I’ve been living with Multiple Sclerosis (MS) publicly for a year and privately for a bit a longer.
Life post-diagnosis has been an adjustment. So far I’m faring well – much better than many others in my situation. My biggest inconveniences are fatigue and the never-ending pre-existing complaint paperwork that I need to complete to get travel insurance.
Going public with my diagnosis was a decision I grappled with, but in the end I decided that other newly diagnosed people googling all the scary things that newly diagnosed people are prone to search might find comfort in reading the experience of a text-book MS patient living life pretty much as she’d planned.
When I first wrote about my diagnosis, I set some ground rules. Most people have respected my requests, others might not have read them.
So in honour of World MS Day (and every person living with a chronic illness who has been told “you don’t look sick”) I’ve sharing eight things you should never say to someone living with MS.
I’m a naturally cheery person. Typically, I take most of what life throws at me in good grace. But having a chronic illness does not obligate me to be perennially happy. Most days I’m Smurfette, singing falalalala as I skip down the path, but I’m also entitled to as many Gargamel days at the next girl.
In the days after I was diagnosed I asked myself “is it better to have MS or cancer?” MS is not lethal, I’ll die with MS not from MS. MS is also not curable. Weighing whether I’d prefer a potentially lethal/potentially curable illness to my current prognosis was a monumental waste of time. I can’t pick and choose, so there’s not much point in wondering about it.
Further, I’m acutely aware that there are people worse off than me. When well-meaning people say “At least it’s not …” it implies that I don’t appreciate my lot in life which isn’t fair. I often wonder if they find themselves inclined to remind their healthy friends that “it could be worse.”
There’s a universal truth for those of us living with chronic illness. Being fatigued is NOT THE SAME as being tired. During periods of last year I suffered bone-aching exhaustion that rendered me incapable of completing my normal daily routine. The sheer effort of making the girls breakfasts, getting them ready for school and dropping them off left me so buggered I needed to lie down afterwards.
While we’re chatting about it, “I’d love to spend the whole day in bed” is also not a helpful thing to say. It may be true for you but there’s a million things I’d rather be doing if I could. The difference is, you have a choice.
“You can beat this” sounds like the right thing to say. It’s also ridiculously unlikely.
Even if I were the very-first-person-in-the-history-of-ever to ‘beat’ MS, it’d likely mean I’d have to spend more time in hospital while the medicos pushed and prodded me more. I will not ‘beat’ MS but I’m not letting it beat me either. My prediction is it’ll be a photo finish at the end of a long and well-lived life.
There are a great many people living with Multiple Sclerosis. Some of them (like me) have relapsing remitting MS, others have primary progressive MS. Some start with relapsing remitting but then develop secondary progressive MS. We’re all diagnosed at different stages. Our lesions form in different parts of our brain and spine. They’re different sizes and depths. MS differs from patient to patient. Your uncle’s prognosis isn’t indicative of my likely progression. Nor is there a blanket treatment suitable for all MS patients.
I’ve chosen my treatment protocol based on the advice of my Neurologist with consideration to the lifestyle of my family. We’re working on the best information that we have to try to achieve the best outcome we can. I’m really sorry that MS has restricted your Uncle’s mobility, but I don’t need to hear the mournful story. I’m well aware of the potential impact MS will have on my quality of life. Dwelling on what MS has taken from others doesn’t make getting through today any easier.
If it’s all the same to you, I’d rather leave God out of this. God played no part in me getting MS. He didn’t choose me from a flock of “potential MS patients” because I’m tough or good natured or less likely to fall in a heap than the next girl. Chance (and the Epstein Barr Virus) gave me MS. God has given me a great deal of things, but MS is not one of them.
Mercifully MS has thus far left me without any obvious outward manifestations. But MS is leaving its mark on my central nervous system.
If through some marvellous medical wizardry you have the ability to see the lesions on my brain and spine with your naked eyes, you should totally see someone about that because you’ll make a bazillion dollars and save the collective MS community a shit tonne of hours spent in the MRI tube.
No I haven’t tried squirting coffee up my bum.
No I haven’t tried giving up gluten.
Or magnet therapy.
Or whatever other supplement you’ve joined a pyramid scheme to flog.
I’m midway through a course of treatment that I chose based on peer-reviewed research, replicated results and science. Choosing my treatment was not a decision I made lightly – my future quality of life relies on picking the right one, so I paid attention.
Don’t shrug your shoulders when I politely decline your suggestion. My refusal of your anecdotal antidote doesn’t mean I’m electing not to cure myself, I’m giving my chosen treatment the very best shot at working.
Here’s to 2017 being the year we finally kiss goodbye to MS!1