Chronic Illness: It’s Your Entire Identity Now
I’m the MS sufferer who will give it to you straight, absent the bullshit and toxic positivity. Today’s topic is Identity.
The MINUTE you develop a chronic illness or a visible disability, that’s it for you. No matter what you’ve accomplished, or who you are, it doesn’t matter anymore. Now you’re a checked box. Your chronic illness is now your entire identity.
I’m an Advanced Care Paramedic, a business owner, a wife, a mother, a very loyal friend, a good human being. I have a temper, it’s been a hard fight to learn how to advocate for myself, and I put sarcasm on everything. I have a twisted sense of humour. I’m an author, an advocate, a soapmaker, and an over thinker.
None of that matters now. Now I’m ‘a disabled woman with multiple sclerosis.’
Stamps box loudly.
Slams book shut.
Bangs gavel.
Last week, we called our finance guy because given our changed circumstances my husband isn’t insured for enough. I can only work minimally, (thank gawd I started my own company many years ago) and having an illness such as MS is costly. If something happens to him, I’m screwed on every level. At least we could hopefully eliminate the financial burden while I try to navigate life without my bestie.
We got our life insurance policies in 2012. Back then, I’d recently quit smoking but occasionally used a nicotine spray under my tongue when the cravings were really bad. I had to have a mouth swab and Andy said I’d be paying smoker rates for my life insurance just because the swab would indicate the nicotine regardless of source, but in a year we could reswab and then my premiums would drop.
Needless to say, I totally forgot about it until we decided to revisit our insurance. So I said to Andy, “And we should go ahead and re-swab me because I haven’t smoked in years.”
He cleared his throat awkwardly. “Actually, you want to keep paying the smoker rates. You’d have to basically get a new policy, and we’d require all the same info again. But now your medical records are a lot thicker. You’d either be uninsurable, or your premium will be so expensive you couldn’t afford it.”
“MS isn’t a terminal illness. It’s life insurance, not disability insurance.”
It’s not my identity, damn it.
“I know, and I agree with you. But the reality is, you could be a 60 year old morbidly obese chain smoker who bull rides on weekends and you’d pay less for premiums than you will with your new medical history.”
All that matters is that I have MS. It didn’t matter that I’m still more active than most. It didn’t matter that I’m now doing cardio twice a week, weight training three times a week, yoga daily, and physio. That I have low normal blood pressure, that a lab twice a year a lab checks all my systems and my numbers are excellent, is irrelevant.
I’m a disabled person with MS, and that’s my identity now.
Then, I phoned the driver’s fitness division of Registries about my appeal that they’ve been sitting on for about 6 months. Yes, I can drop to a class 5 but because they now know about my condition, I’m required to get a driver’s medical every 5 years. Or, if I want to keep my class 4 I’ll need a medical every 3. Stupid B!tch NP wrote the wrong form of MS (she wrote a serious one, I have the ‘best’ one) but I do still have MS so now the government will be watching and evaluating me until I’m dead.
“There’s nothing about my disease that affects my ability to drive.”
“Right now. But MS is a progressive disease, and driving is a privilege, not a right.”
Is this woman actually explaining to me how the disease that ruined my life 4 years ago works? And yes, I’m also aware that driving is a privilege.
A privilege I’ve earned, over and over again. I have on the track training for driving safely at all speeds, in all conditions. I have on the track accident avoidance training. I’ve been trained in defensive driving for years. I’ve never had a single demerit, never been pulled over, never had an insurance claim by me or because of me. No accidents, one photo radar ticket, driven in all conditions. I’m an excellent driver and have been for over 20 years.
Doesn’t matter.
Now I have MS for my identity, and I’m reliant on a doctor to give me permission to keep driving providing I can even find one given how our provincial government is running them off. I need to drive so I can work in the summers and get my own groceries like the 44 year old adult that I am, and because my days of walking to the pharmacy or the grocery store are over.
Doesn’t matter that driver’s medicals are now upwards of 120 bucks out of my pocket. It doesn’t matter that there are no medical professionals in my area anymore, the closest walk in clinic is 30 km away in another town. Doesn’t matter that I’m immunocompromised and my license renews in the thick of flu/RSV/Covid season so the last place I want to be is in a walk-in clinic waiting for hours surrounded by people who might be unwell and contagious.
Doesn’t matter.
I’m just a disabled woman with MS. An identity I worked really hard my entire adult life to never have. Life is already pretty hard, and there’s no end to people, organizations, industries, etc. with no issue making it harder. It doesn’t matter how much I’ve tried not to make this shitty, life-ruining disease my entire identity, society has decided for me.
Do you have MS? This disease is in control of your life now, not you. The government is in charge now, not you. You have a chronic illness, so you now get to jump through a bunch of hoops to prove over and over that you’re still an adult capable of doing adult things. It doesn’t matter that your problem is a drop foot and an inability to stand only on your left leg for longer than three seconds. Over the last four years, it’s become abundantly clear now that I’m disabled by a chronic illness: I have very little worth and less rights than the healthy, able-bodied folks.
Even the morbidly obese chain smoking bull riders.
I know, this isn’t what you wanted to hear. There’s plenty of ‘MS warriors’ online who will happily tell you that MS is really a gift, so much learning and personal growth, it’s not that bad, just gotta think positive and go vegan/gluten free/vegetable free or whatever. You’d never know how strong you are if you hadn’t been forced to be strong! Gag me. I’ll tell you the truth.
MS owns you now.
Your options are limited, and so are you. In large part due to how the world views and treats disabled people, but that’s also irrelevant because it is what it is.
If you’ve been diagnosed with MS, I’m sorry. This isn’t something you’ll get past, this is your life now. The best thing is to accept that you’ll have very little control over your life moving forward. Do the best you can, and realize that you’ll be living in a perpetual state of grief. But for how long?
I don’t know. I’m at four years, and I still get hit so hard by grief sometimes, it literally takes my breath away. The insurance and Registries thing happened in the past week and I’m depressed and crying non-stop. I’ve made great progress in the past few months, great progress from where I was after that second flare-up. It’s all irrelevant. Why am I even trying when it doesn’t matter? It doesn’t matter how often I work out or how active I am. Doesn’t matter that I follow every recommendation from my neurologist. I have Registries overseeing me for the rest of my life, I’m uninsurable, and every aspect of my life is governed by this fucking disease.
At least it’ll shorten any awful ‘let’s go around the room and everyone can tell us a little about yourself’ moments in future. I can now sum up my entire identity with “Hi, I’m a disabled woman with MS.”
Enough said.
It’s not that deep, folks. I’ll bounce back in a couple days because that’s what I do. I’ve been strong my whole life and I didn’t need this BS to prove it to me. Right now? I’m not strong. I’m tired and angry and fed up.
