***The above photo is a ink illustattion I did back in 2015. This piece called, “Cracked.”***
For years I have been asking the government for help. I live with Ehlers Danlos Syndrome, Postural Orthostatic Tachicardia and am borderline Mastocytosis. According to my doctors I am unable to work and considered disabled. However, I have yet to receive disability as it is something I have been applying to get for a few years now. To learn about these conditions please see my first blog post written by my husband.
You can find it here:
When I tell people I do not have disability they look baffled and confused. For a while I shrugged it off. After multiple refusals denying me help (because to me it is denying someone help that needs help) I knew I could no longer keep my mouth shut.
I have heard of many other people that friends or family members that have been able to aquire Federal or Provincal disability.
I have been talking to others that are on disability here in BC, and they tell me that they are only given a little over $900 a month. Who can afford to live off of that especially here on Vancouver island. Rent alone is around $700-$1300 depending on your residence.
Needless to say this fuelled me more. People living with medical expenses like drugs, and medical equipment how are they expected to have a good quality of life while struggling to survive. No wonder people skip meds, and don’t get the treatements they need.
Living with any chronic illness is hard enough without adding the stress of medical expenses. I’ll use the following as an example so that those living without disease or illness maybe able to understand.
Say for instance you get Cancer. Did you know you may have to pay for your treatment regiment? Say your having chemo did you know chemo costs.
Here is a prime example; a woman in Toronto in 2009 had a neuroendocrine tumour that had metastasized, she could take a drug that would help her. It costs $8,000 a month.
You can read about this here:
No one goes out of their way to get sick. When we do get ill we would hope that if we are unable to work, and can’t afford to live that the government would help us out. Many people have to resort to fundraising.
I feel as though I am being pushed aside by the system. Is this because they don’t understand my conditions and diseases. Is it because I do not appear to be disabled.
What part of I feel like I am a fish being deboned alive makes it seem like I can work? I would love to work.
I have dreams and hopes. They have been broken and smashed, by disease. Now what am I to do? Fade away into the background and not speak up? I think not.
I am here to say the system is not fair. Just like life in itself isn’t fair. I have been handed an “unfair card” in life (I heard this from many people over the years). Now an “unfair” card in my search for disability? If I don’t talk no one will learn about the things I face.
I will not continue to be quiet, I will voice my opinion. I matter. I am ill. I am tried, but I will never give up. I will die trying if I have to. This is an issue that needs to be addressed.
Thank you kindly for you time always.
I remain hopeful always,