Good morning.
I consider myself to be one of the luckiest people in the world. I was diagnosed with MS in January 1998. I was lucky because I had a family doctor who recognized my symptoms right away. I lived in a city with a dedicated MS clinic. One of my neurologists was a well-known and respected clinician. I have a positive outlook on life. I am educated and have a natural curiosity about everything, especially the brain. I adopted researching MS as a new hobby.
When I was laid off nine years ago, I went back to school for a business diploma in order to find work. After a year of working two part-time jobs with no benefits and no prospects in Halifax, I left my family and friends for a job in Fort McMurray.
I try to look after myself. I hit the gym three times a week and volunteer in my community. I've been a guinea pig for MS research and continue to add to the knowledge of this disease by participating in research by the medical community. I've participated in 11 different long-distance bike rides to raise funds for the MS Society of Canada. I raise awareness about MS.
I tell you all this to illustrate my sense of responsibility to myself, my family and others with MS, but I am terrified about my future. What will happen to me if I do become disabled?
The nature of MS is that I don't know when I will get better. I don't know if I will get better. I look and feel pretty good right now, but next week I could be in a wheelchair. If I became disabled next week I may not qualify for EI, sickness and/or CPP disability benefits, because I don't know how long I will be disabled.
The first question you are asked when filling out forms to determine if you're disabled is whether your impairment has lasted or is expected to last for a continuous period of at least 12 months. Your guess would be as good as mine. The only options I have to answer this question, though, is a yes or a no.
I'm truly grateful for universal health care. However, if I do become disabled and am unable to work, how do I cover my medical expenses? I have some coverage at work, but I am also paying for private health insurance. Without it, I'm afraid of having to choose between seeing a dentist and paying rent. I live in Alberta, where my MS drug is mostly covered by the province. I still have to get extra non-group insurance at a monthly cost to myself, in order to continue on the drug.
I was diagnosed with depression five years before I developed MS, which is not unusual. It occurs frequently in people with MS. In my case and for many others, depression clouds your judgment and ability to interact with others. Luckily for me, I've been on medication for years, which has allowed me to live a mostly depression-free life. Others aren't so lucky, either with medication or learning how to cope. If you're already depressed and then faced with disability, loss of income and perhaps changes in family dynamic because of it, getting through forms and dealing with EI or Service Canada is going to be a monumental task.
If I do become disabled, I need to maintain a social support network. I can't do that without some sort of income. I have been witness to young people with MS going into nursing homes because they aren't able—and just can't afford—to look after themselves. I do not want to be that person in a wheelchair waiting anxiously for someone familiar to walk through the door, or wondering if we're being served meatloaf again tonight. I want to continue to live a full life.
If I have a relapse and I'm sidelined for six months or longer I will be in financial difficulty. If I had a broken leg, I'd know an approximate amount of time to expect to be away from work and on reduced income. With MS and other episodic disabilities, nobody knows.
I'm a realist. I know that I will probably face disability at some point in the future, but my biggest fear is not that I will lose the ability to walk or see. What I fear most is that I will not have the ability to continue to work and contribute financially to my own welfare.
I am one of the lucky ones with MS. I am currently employed full time with a company that respects and supports me. I have a support system outside of work and I can advocate for myself. Not everybody is so lucky. That's why I'm here today.
Thank you.