I completely understand where you're coming from. I look at it and I know there's not a simple answer. I think the answer is going to be as complicated as the disease is.
I was on EI when I went completely blind. The medication I was on made me quite sick. It wasn't even so much that I couldn't see. Actually, the reason I couldn't work was the side effects of the medication. After that, it was just sort of about trying to figure out what my body could do and whether I could go back to the job I had been doing before. At that point, I had moved back in with my parents. I had just graduated from university, so I hadn't really started on my own quite yet.
The second time my eye went blurry, I was on contract with the Government of Alberta and I didn't really have a choice. I didn't really want anyone to know, so I wore an eye patch at work because the computer screen bothered my eyes. I just continued to work and told people I scratched it at soccer or something. It was more to try to see if I could actually do that, as well, so that people might look at it after the fact and say, “You could have easily taken time off. Why didn't you?” It's that sort of feeling, like I have some sort of responsibility.
The support at work.... Every so often, I think, people forget that I have MS. Every so often, I do get that question, “How are you feeling? How are you doing?” That's really worthwhile. It's those relationships and the meaningful work that I do that kind of drive me, because I know that if I'm really, really tired, I'm going to miss a meeting or I'm going to miss a deadline. These are things that I don't want to do or I'm going to put my coworkers in a tough situation.
The times when something gets even more serious, I know that my parents are there, but I don't know if that's good enough, if you know what I mean. The burden shouldn't be on them. I've been trying to work this entire time. Even for my benefits, I have to give them a doctor's note every year to tell them that I have MS. It makes no sense. Why? I can give you a doctor's note when I don't have MS anymore. It's that total misunderstanding. I think awareness and understanding are a huge part of it.