KJIPUKTUK (Halifax) – Things went relatively well for Emma, a mother who lives with her daughter in a town an hour or so away from Halifax. Then she got sick, lost her job, and ended up on social assistance.
It’s called fibromyalgia It means you experience chronic pain and fatigue. You’re always in pain and you’re always tired. It comes with a myriad of other health condition that follow along with it, other autoimmune diseases. I have a certain type or arthritis, things like that.
I was handling it fairly well with medications, but the side effects of those meds become increasingly worse over time.
Being in constant pain is depressing. I am more susceptible to getting sick, I often get bladder infections, that sort of thing. Up to a couple of years ago I was able to hold down a full-time job, but it has progressed to the point where I can work, but I get sick a lot, and then I end up getting fired because I am missing too much time.
My belief is that we’re more sensitive to things in food and certain chemicals, so maybe you can manage it with diet. It’s not extreme for me, as it can be for some people, and I am learning to manage. But then again, Community Services isn’t giving me the money or the resources to do that.
I have family members who tell me to just get out of bed and do more. And social workers, they are paid to be sceptical, and I found them to be judgemental, some are worse than others.
My daughter was diagnosed with it as well, a couple of years ago, so I am also working on trying to help her. It’s not known whether fibromyalgia is genetic, but people who have it have noticed that their family members and children are often also affected.
I had a large portion of my life when I wasn’t dealing with fibromyalgia and I was I able to live my normal life, but my daughter is still so young… She wonders what kind of careers she can do, her friends don’t understand it, her teachers can be really judgemental. She goes to school as much as she can, but when she goes full days she gets really tired, and ends up missing more time.
She was diagnosed when 14, and she is 16 now. She gets depressed it is so overwhelming. And then there are things like not being able to afford the clothes her friends have because of what her mother is going through, it all adds up.
You want to be a better parent, and be more available and do more, but you’re constantly fighting the system, and finding new barriers in your way, It can be frustrating. But you gotta do what you gotta do. I was very luck that I got my education in before I got sick, so I know how to talk to people.
I tried to access the special diet allowance through Community Services and it was insane. They expect you to go out, take pictures of everything that you would eat, figure out what the difference in cost is between what you get and what you should be getting, and then at the end off all that I ended up with $20 more per month. It wasn’t even near enough. When I worked it out, it would have to be another 100 or 150 dollars
And then they took even those $20 away.They didn’t tell me why. I had to go through the whole process again, and it became a headache. I had to do it every year. You don’t get enough to survive on social assistance anyway. Just look at what they give for housing. Where are you going to live for that money?
Case workers are really limited in what they can give you, their hands are tied, and they’re overworked. Just look how many people they are supposed to look after. No wonder they become jaded.
If I could work from home, I could do call centre work, I would need a certain computer with certain capabilities, but that isn’t something Community Services supports. I am still working on this. We’ll see how it goes.
Together with diets, the other hard thing is finding adequate housing. When you go on social services it ruins your credit rating. In most cases you have a certain lifestyle before you get sick, then when you get sick, you end up in situations where you don’t have a good credit rating. Most places will not even look at your application when you are on social assistance. It is an automatic no to find housing. And if they look at you, but you have bad credit, you are out.
Right now where I live is decent. But when my daughter turns 18 the (federal) child tax credit will be taken away. That means I will not be able to live here anymore. It’s stressful and scary.
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