‘We have to jump through hoops to get help’
Pavel says those living with MS must exercise their rights in accessing government services.
My background is in music and the voluntary sector. I trained at music college, and then the conservatory, and then I worked in voluntary organisations for some time. I’m still working now, but I do flexible hours and work from home.
The All-Russian Multiple Sclerosis Society (ARMSS) provides support to help people with MS work from home, or they help your employer to make modifications. For instance, to change your working hours so you don’t have to work too long at once. Since I work for ARMSS, I’ve really benefited from their support and encouragement. I feel useful and I am part of a team.
It is not typical, where I live, to seek medical care for any minor problem, so for some time I didn’t seek help to treat my symptoms. I experienced paralysis in some facial muscles, my vision was blurred and I had nerve problems in my eyes. I was only diagnosed with MS in 1999, several years later.
I have secondary progressive MS. This means I feel weakness in my limbs, I get fatigue, I have problems with my bladder and bowels, and blurring in my eyes. Sometimes I feel tremors.
Getting around is my main problem. I can’t go out by myself, I can’t get to the places I want to be. My home is inaccessible. Finding friendly environments is one of the biggest problems, but there is not much I can do about this.
I take herbal supplements to treat the spasticity and spasms in my muscles. I exercise and keep active as well, to keep the muscles strong, but I refuse to take interferon-beta-1b. The side effects are severe, and unfortunately there is no substitute. I still have to use a wheelchair to get around and I delegate most physical tasks to my family.
My mum visits me often, she does most of the cooking and chores. I am fortunate in that all my family plan activities to accommodate my needs. On the other hand, all of the socialising I do with friends is online. Because I can’t get around, I have to stay at home, so I mainly keep up social relationships by phone or the internet.
The government provides $37 a month towards a paid carer, but I haven’t needed one yet. It is actually kind of hard to find out what support you can access through the government, they don’t make this information easily available. Officially, for example, healthcare is free and there is an unemployment pension for those who can’t work, but people living with MS have to jump through hoops to access support and the care they need.
People living with MS still face immense challenges to be accepted in society. Russian people are reluctant to understand our concerns, and this exacerbates the barriers we face in terms of accessibility.
My advice to people living with MS is to learn to live with it and make accommodations, as necessary, given your condition. Make sure you find out what your rights are and what the government should provide, and make sure to exercise your rights to services.
Also, take note of the next elections.
For more on MS visit the Multiple Sclerosis International Federation.
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