"Sometimes we receive things in life that we didn’t choose, they chose us. It’s no surprise why my road wasn’t the bumpiest on my journey from being HIV-positive and working to HIV-positive and unable to work."
Back in 2003 when I was diagnosed HIV-positive I had been at my job for over 20 years. I was earning nearly $25 per hour and had one hundred percent of my benefits paid.
I was told I didn’t need to take medications right away, in fact my doctor said it might be ten years before I had to worry about going on them. This was a relief because I didn’t know how it would play out with the company, if they were to start questioning my drug costs. My health information was private but there had to be the chance, when my medication claims reached in to the thousands, that it might sound some alarms that would set off communication between my employer and the insurance company.
The insurance company had trimmed down our benefit plan over the years and they no longer paid for many name brand medications. A person would have to prove that the generic brand wasn’t doing as well as the name brand before they would receive the name brand.
In any event, the job ended four years after my diagnosis. I had been off work a few times during my last years there and had become used to having a lower income but I always had that security of “I can go back to work”. On my last return to work, I was given seven months warning the company was being sold so I made plans for what I would do next.
Since I was going on EI (Employment Insurance) I enquired if I could go back to school and be trained to do something else. My health at the time wasn’t suited to factory work anymore. With the help of my doctor, I therefore signed up to take a Personal Support Worker course. Everything fell into place quickly and I was working again within a year.
Working yes, but at $10 per hour less than my previous job, plus I wouldn’t see a 40-hour week very often. I learned too that I would have to work 1,500 hours before I qualified for even the basic benefits. I reached that goal by asking for extra hours, making myself available for longer working days and filling in for people who went on holidays. At one point I worked ten weeks straight without a day off.
While working to reach the target hours I saved up all my receipts from medications and even for my glasses. When I finally qualified, it was for 80% paid coverage, I would be responsible for the remaining 20%. I had to pay for everything, file claim forms then wait for reimbursement
I always feared sending in claims for antiretroviral medications, again because it could lead to discussions between my employer and the insurance company. I didn’t have to disclose my HIV status and I didn’t. We all like to think it is always up to us to tell but in reality, we really have to know who to trust.
Dealing with the insurance companies became unbearable. They would send me forms to fill out but when I returned them, they claimed two weeks later they hadn’t received them. This became so stressful, I was behind in my rent, I had no life, I couldn’t go anywhere or do anything.
Two years into this job, with the stress from dealing with all of this plus more stress from some family situations, my CD4 count started crashing. Each time I went for my bloodwork, the results came back lower. At the time, if you hit a count of 350, you had to go on medications, I dropped to 330. July 1stt 2010 I started my life on HIV meds. It was then another big reality set in, I would have to leave my job, a job I truly loved. Between the side effects and the stress, it had to happen. What was next? The process of going on government assistance began. More forms to fill out, more waiting.
When I had the factory job at age 25 I felt secure, I was finally ready to settle down and make my life, work to retire at 65 and feel good that I had done my part. I just had to keep moving forward nothing was going to stop me.
Ah, the luxury of youth, that super power of invincibility. But I wasn’t going to wake each day and think the worst. No way was I going to get sick and die today or tomorrow.
However, I had always lived for today, I didn’t plan well for my retirement. While in the factory job, they started a company pension plan but I was 18 years late getting involved in it. When the company closed, we were allowed to keep the full amount of the company’s contribution but for me it still wasn’t anything great - about half a year’s earnings.
When the younger generation makes fun of my age I would like to respond with, “at least I made it, you haven’t and you may not” but it would probably fall on deaf ears. I am somewhat healthy but experiencing some aging issues. I live on government assistance, my medications are paid for, it’s nothing I have to stress over anymore.
Under my disability arrangement, I 'm able to earn some money but I have to claim all earnings and there are conditions I have to abide by. I have earned some money through my photography and I work as a Peer Research Associate for the OHTN (Ontario HIV Treatment Network), well when they have some work for me.
I don’t see my health improving enough to be able to return to my Personal Support Worker job, in fact, I have days when I feel I could use the help myself.
It’s sad that some feel I’m lucky to be accepted for government assistance and not have to wake up each morning and go to work. I really wish I could; I miss that part of my life. But they are the lucky ones. At the end of the week they have money to go to movies, or out with friends for a drink. They have money they can save to take a trip to the States or Europe. No one will be checking their bank account to see how they spend their money.
I was prepared for these limitations though. Maybe my age made it easier. What I really never expected was the mental part of it all - . being stigmatized as a “welfare case” in the eyes of some and feeling isolated. No one asks me “hey,what are ya doin’?” anymore. They know I can’t afford to do what they plan so they never ask. The stigma isn’t limited to other people; I stigmatize myself, and I’m guilty of isolating myself from much of what goes on around me.
When I had my job and a car, I would ask people to come with me, we went everywhere. Now I just don’t want to ask anyone for anything. I’m not ashamed of myself, just embarrassed to have to ask.
The worst part for me is the time I spend alone. I don’t feel depressed, I really don’t; I’m aware of how I feel and everything that’s happening. I have things I can do to get away from it, ways to stay busy.
I see being on disability as a big part of why I’m single. I protect myself by not getting too involved with anyone and pulling away before it goes too far. I don’t believe I have what it takes to bring enough to a relationship. I see my income as less than half the average person’s income so I am less than half the person, monetarily speaking. (Now that sounds worse than what I mean, so don’t take that in a wrong direction.)
A man dating a man can be complicated enough, differences in income can be make it even more so.
I’m not comfortable living this way but it isn’t all bad. There are fewer things to worry about, like losing my job and having to start over again. I’m not out every weekend as I use to, filling a barstool and emptying glasses of beer – alone. I’m alone here, right now but I’m getting to know myself and writing about it.
I pass my time here online writing, sharing information, being an advocate in my community, volunteering when I can. I keep busy.
Sometimes we receive things in life that we didn’t choose, they chose us. I’m doing what I’m supposed to, I guess, it’s been a positive thing, the karma is good - really good in fact!