About 30 years ago when I was diagnosed with MS there were no treatments and no cure in sight.
Back then all I knew about MS was that it was an incurable brain disease that lands you in a wheelchair or worse.
My neurologist— director of the MS Clinic at the prestigious Montreal Neurological Institute said, 'all we do know is that we don't know much.' The little information he did share was unclear. I assumed he felt it was too complicated for my uneducated mind. When I mentioned this to other health care providers, many shrugged and said neurologists had the worst bedside manner; insensitivity was to be expected.
Staying in the dark was not acceptable. As a single mother with three small kids I wasn't going to sit quietly and wait for it to destroy our lives.
I joined a live support group to see first hand what it was like to live with MS while researching alternative approaches to dealing with chronic conditions.
The 25 or so group members with varying degrees of disability, were kind and welcoming. I saw the power of validation and compassion. It was beautiful. People felt accepted, like they belonged. So many MSer's feel isolated and judged. I completely understand the need for this kind of support.
When I raised the subject of diet and exercise as areas we can focus on to improve our quality of life, they were not interested and quickly changed the subject. Even though I had been diagnosed a few months prior I was shocked to see what little they knew or wanted to know about their condition, let alone discuss things that we can control. As I watched them enjoy donuts and sweet drinks talking about what they lost rather than how to fight it, it was clear this group wasn't for me.
Drug treatments for MS began to arrive in 1993. Neurologists finally had something to offer their terrified patients. All drugs have side effects, some riskier than others. But hey, if your doctor tells you to take it, how can you say no?
By 1995 I started a support group to help inform and validate members not only of the physical changes in the MS body but the emotional turmoil that everyone experiences, like guilt, fear, isolation. I figured if I needed this, others would too.
Participants who had MS much longer than me quickly appreciated learning new facts as well as having their emotional struggles validated. They received tangible tools from invited 'alternative' health professionals who discussed things like mindfulness, inflammation and how to combat it, the benefit of exercise and nutrition. Things our doctors rarely discuss. The veil of darkness lifted as they became empowered rather than defeated.
Since then I've joined about a dozen online MS support groups, quitting the ones that triggered hopelessness and helplessness.
Every day I read posts to see what's going on in the MS patient world. While I see a lot of love and compassion, fear and confusion remain. Fear, in part, caused by a lack of information, a lack of emotional support, and exposure to charlatans touting false hope with expensive, potentially dangerous treatments.
After decades of firsthand experience and researching MS, I am comfortable with the way I manage my health. I combine traditional and alternative approaches tailored to my specific needs. My quality of life has gone way up since we made lifestyle changes 7 years ago.
The groups I joined keep me motivated and inspired. I can't imagine going though this without them. I may not visit for weeks and that's ok. It's comforting to know help is close by.
If you want to join a group, think about what you want and pay attention to how you feel when you leave. Do you feel uplifted and hopeful, or sad and angry. If it doesn't feel right, look for another one. If you don't see what you need, create your own. It's easier than ever these days.
We don't have to feel helpless. Be informed, ask for help, give help. You have choices and you are not alone!
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