Sunday, October 9, 2011
A few years after I was diagnosed, I attended a support group for people with MS and our significant others. It had been established by two men in their forties and their wives and was scheduled to meet monthly in the recreation room of a local church.
At this time, I nobly (and mistakenly) believed that although I was doing fairly well, I could be of some support to others who were not. Of course, this was ridiculous. I needed support at least as well as anyone else. However, I found out rather quickly, that this was not the group for me. The broad spectrum of displayed symptoms and petty bickering over who was going to buy a missing member a get-well card, eventually sent me heading for the hills. The following are my personal recommendations when it comes to seeking support in living with the ups and downs of MS.
If you would like to try a support group, find one that has a qualified, professional leader with experience facilitating groups of individuals with serious illness or disability.
Find a group that specifically focuses on newly diagnosed patients if you are newly diagnosed. If you're numb and tingly, the sight of men and women with advanced cases of MS will scare you half to death. And...
when you complain about feeling fatigued, others with more serious disabilities may roll their eyes and rev the engines on their scooters.
Attend free seminars/dinners put on by the pharma's. You may end up in a conversation with someone with whom you can identify, with similar symptoms, situations and experiences. Consider meeting in a public environment for coffee and informal casual support. You may be able to share information comfortably, without feeling like you're constantly unloading on your family and friends. You may even develop a meaningful friendship. If your new acquaintance turns out to be an emotional vampire, change your cell phone number.
If you attend religious services, try to continue even when you're not feeling your best. However, don't allow any well-meaning person try to make you feel guilty because you're dealing with a disease. You did not bring this on yourself because of a "lack of faithfulness" nor is God "testing" you.
If you don't participate in any religion, it's not a bad idea to explore spirituality at this time. Remember the mind/body connection. It's there. And when we're feeling our weakest and most down-trodden may be when we receive our clearest revelations and greatest gifts.
Last, and most important - if a friend offers help, try not to refuse. Don't be too proud and independent to ask for and take assistance. You may be able to give back simply by allowing another individual to feel helpful.
Where do you receive your greatest source of support?