The Unspeakable Bits; From A Life With MS
I was riding the city bus the other day and we took a route I don’t normally commute along. At the side of the road I saw a billboard for a statewide hotline to report the abuse or neglect of elderly people. That, along with last month’s Unspeakable Bits blog about divorce and MS got me thinking about the abuse and neglect of people living with disabilities – particularly people living with multiple sclerosis.
The stories of people living through unkind treatment first make me sad and then they make me angry. I feel like it’s time to address this unspeakable part of living with MS.
First, we must realize that we are just as good as everyone else in the world and we deserve to be treated with common courtesy and respect just like any living soul. If we require extra help or assistance to meet our everyday needs, it is not asking too much to request help (and to expect that it be given without a side-order of guilt).
We needn’t stand for people talking about us like we’re not in the room. We shouldn’t be made to feel a burden and we are most assuredly not to be the targets of some emotional archer’s misguided slings and inappropriate arrows.
When I read of a person being told that they are “lucky I stay with you otherwise you’d have no health insurance,” or some other rotten comment, I want to vomit. When I read that some member of someone’s family has called them “lazy” or a “fake,” I shake my head and wonder what’s wrong with people. And when someone tells me of a person with MS being “kept” like an unwanted pet in some room, I simply want to cry.
It breaks my heart when I hear people living with MS not feeling worthy of better treatment. I don’t pretend to know the details and intricacies of the emotional tapestry that makes up a person’s relationship. But, for those who suspect that they have become entangled in an unhealthy relationship, and that they shouldn’t be treated or spoken to the way they are, there are resources and help out there. Call 1-800-344-4867 to talk to an MS Navigator about resources and assistance in your area:
- The National Domestic Violence Hotline
- Mental Health Resources by state
- The Befrienders Worldwide can help both USA and international readers find help.
- MS Friends is a great resource if you just want to talk with someone who knows MS from our side.
- Finally, if the immediate situation has become severe enough that you fear for your physical safety, call 911 or your local police station. The US Law Enforcement site has a listing of all local police contact numbers.
Would we stand for someone talking ill of a deaf person in their presence because he can’t hear the comment? Do we sit by if a child is beaten in front of us? Don’t we call 911 if we see a dog locked in a car on a sweltering day? How is it that we allow this kind of treatment of ourselves?
We are not toys to be made fun of nor are we emotional punching bags on which frustrations can be taken out. We are thinking, feeling, sentient beings who deserve love and respect and understanding and we should not accept less. MS takes enough from all of us. We needn’t give over our dignity to someone who thinks they are put upon by our disease.
This is not an easy subject to talk about but one I believe must be addressed. If you feel strongly – as obviously do I – please leave a comment. We can help one another in these pages as much as the resources listed can.
Wishing you and your family the best of health.
You can follow Trevis via TrevisLGleason.com, his Life With MS Facebook Page on Twitter and on the EverydayHealth.com “Life With MS” Blog. And also, check out his bi-monthly blog for the UK.