The cost of chronic illness

Lene Andersen is a writer and photographer living in Toronto. She has had severe rheumatoid arthritis since childhood and uses a power wheelchair. Lene is the author of the award-winning blog, The Seated View.

 

When we talk about the cost of living with a chronic illness, it usually refers to the impact on quality of life - the ability to participate in your family, community and work.

Living with a chronic illness is also expensive.

I am lucky there's a financial assistance program that covers the very expensive medication which has given me back so much of my life. Because of this I can work part-time, give back to my community and be there for my family.

Even so, other medical conditions pop up, as do side effects from the drug that gave me back my life. More medications are needed, some only covered in generic form and others not at all. Sometimes, the generics don't work as well as the brand name. I have two choices: endanger my health by not taking the meds or pay for the brand name myself. Every month, they cost me $400 I don't have.

Treating a chronic illness isn’t just about drugs. Physiotherapy can help maintain my level of function but costs $80 for one treatment. Without it, I have high pain levels that can reduce life to just getting through the day. With it, I go deeper into debt.

I have used a power wheelchair since I was a teenager. It is my legs, my mobility -  without it, I would be confined to bed. Because I do not receive social assistance, I pay for maintenance and repair myself. This past summer, it cost me $2000.

I am a lucky woman. I have good medical care and medication, treatment and equipment that give me the opportunity to live a wonderful life even with a severe chronic illness and disability. Without them, I risk my health and lose the ability to live my life. With them, I sink forever deeper into debt because I am also caught in a vicious circle of necessary expenses that I cannot afford.