Chronic-care side effects go far beyond the physical

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This article was published 08/02/2025 (572 days ago), so information in it may no longer be current.

Nobody gets through life without struggles.

A common phrase uttered in my room is “we can do hard things.” We can. And we do. Every day.

Some of my struggles are obvious. Others, you’d never know about unless I told you. I get asked this question a lot: what’s hard for you? Being sick is definitely hard. What can be even more difficult is the complications it causes in my personal life.

Such as finances.

Being on long-term disability is challenging. My earnings, except for a very small cost-of-living adjustment, are frozen in time.

I receive 66 per cent of the average salary I last earned before I went on long-term disability in 2009 while employed at the Winnipeg Regional Health Authority, but it’s also taxable. I’m making substantially less than when I worked and I have substantially more expenses now that I’m a sick person.

There’s no supplementing this income, either. I can’t earn a penny or I jeopardize my long-term disability and will be cut off from my benefits. There’s no side hustles, consulting or freelancing. You’re probably wondering: how does this column work then?

The answer is: I can’t charge the Free Press for my column. I write it for no remuneration other than the satisfaction I get from interacting with you, the readers.

I create homemade cards, paint in various mediums, make dreamcatchers and do traditional beadwork, but I cannot sell any of these items either. I enjoy gifting these creations to friends, family, other residents and staff. People often inquire about buying my items or making custom orders, and I have to tell them I can’t.

A stagnant income for 15 years while life gets increasingly more expensive is burdensome. Last year, the amount I pay for per diems (the daily fee charged) to live in chronic care went up by almost $2,000. I’m currently paying more than $37,000 annually for my care.

We’ll never get ahead as long as I am alive. My husband would be better off financially with me dead, which doesn’t make me feel particularly good.

Another challenge is being isolated and bedridden. I spend almost all of my time in a tiny, hot room, lying in bed, requiring turning and repositioning every two hours.

I cannot transfer to a wheelchair and get someone to take me for a walk or out to Assiniboine Park across the street. My only outings are to other hospitals by stretcher service or ambulance. It’s either for a test, appointment or procedure, or if I’m very sick and need to be transported to the ER.

The transfers are risky because I can and have broken bones while being moved.

Sometimes, I get so frustrated by being trapped in this room and being alone, unable to do things without help, that I am reduced to tears. Sadly, crying is not even comforting because I can’t reach my Kleenex without assistance. I’m not blowing my nose on my sheets though. There’s a line I won’t cross.

Being a married sick person is something that never gets easier. One of the hardest things I’m forced to do because of my health is live apart from my husband, Brent. It’s been eight years and I still am not used to it. I still reach for him in bed every night.

I’m crying writing this column, remembering how much I loved our Saturdays together. Running errands. Holding hands while grocery shopping. Brent bugging me about how long it would take me to choose a bag of chips (I found the aisle overwhelming with choices). Brent was the driver on our outings, I was the navigator.

I miss cooking meals and making him breakfast in bed and tea lattes on the weekend — I make a mean waffle. I miss making his lunches for work. I miss having him tuck me in at night. My nights here are long, disruptive and lonely.

And then there are the life-cycle events I can’t take part in. I don’t get to go to people’s weddings, birthdays, showers, socials, retirements, anniversaries or any other celebrations.

I miss funerals too, which bothers me a lot. It feels impudent not being able to pay my respects to deceased loved ones. I also can no longer worship in person at my synagogue.

Because I am left out, I find holidays depressing. It’s tough enough not being able to eat all the yummy food, but to not even have the option to be part of the celebrations makes me feel excluded and forlorn.

I’m not kvetching. We all have our struggles. I’m simply illustrating that people with chronic illnesses and disabilities are affected in ways beyond medical. Sometimes, the non-medical issues are more formidable than our actual health problems.

There’s medicine for my nausea and pain. There’s TPN to replace the food I can no longer eat. There’s no medicine for loneliness. There’s no cure for living apart from my spouse. There’s no fixing my finances (unless I win the lottery). There’s no making up for all the holidays I have missed.

All I can do is continue on this journey the best I can. Enjoy the sparks of joy I do have.

And maybe ask someone to find a better spot for my Kleenex.

shawna.forestersmith@freepress.mb.ca Shawna (Shoshana) Forester Smith is a chronically ill, disabled Ojibwe writer and health-care advocate who lives on a chronic-care unit at Deer Lodge Centre.