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.
Trevis
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.
a powerful read, i'm glad i happend upon it!! i am living with ms, i have the best family and husband a girl could ask for. i can't drive and my husband takes me everywhere, always with a loving smile.
ReplyDeletei see the neglect and unkindness. people who don't have what i have. i always wish i could do more for these beautiful people living with ms. thanks, debbie
I have been treated badly even when people see that I have a disability because of where I park or my medical ID and I am not in a wheelchair or walk funny. Just very slow, off balance, have cognitive problems, arm and leg weakness, painful spasms, and any other things. I am finally getting a service dog to help me with some of my issues like picking things up that I drop, helping me find a place to sit when weak or have spasms. I am also hoping this will help others see that I am a disabled person in the "real" sense and create a good feeling as dogs can be such great bonding/awareness vehicles for disabled persons.
ReplyDeleteI sometimes forget how really fortunate I am, but stories such as this remind me. I have a loving family and caring friends who not only help me, but also go out of their way to bring me happiness. MS may have slowed me down, and it has definitely robbed me of a great deal; however, I never feel as if I'm lacking when I'm surrounded by love.
ReplyDeleteI feel so sorry for the people to whom you refer -- it must be a horrible existence!
Peace,
Muff
I am on ss disability,have ms, and I have been abused physically,emotionally,sexually....pretty much every conceivable way by my husband,and some of his friends. People tend to judge,to just not understand what leaving your abuser entails. Financially,physically,emotionally,if a person has a child(as I do)that has even more uncertainties. Safety is an issue,80% of people in domestic violence situations that have been murdured have had it occure when or shortly after leaving! Obviously healthcare is an issue if your under your spouces insurance. People,even family tend to look the other way,not wanting the burdon of living with a disabled lady and her young son. I pray every day for a miracle,to find out about some resource that I have not looked into. In the mean time I thank God for my son and my life,and try to have a smile on my face,forgiveness in my heart and hope for our future.
ReplyDeleteFiatangel, your comment is heart breaking. I have just said a prayer for you.
DeleteI am on ss disability,have ms, and I have been abused physically,emotionally,sexually....pretty much every conceivable way by my husband,and some of his friends. People tend to judge,to just not understand what leaving your abuser entails. Financially,physically,emotionally,if a person has a child(as I do)that has even more uncertainties. Safety is an issue,80% of people in domestic violence situations that have been murdured have had it occure when or shortly after leaving! Obviously healthcare is an issue if your under your spouces insurance. People,even family tend to look the other way,not wanting the burdon of living with a disabled lady and her young son. I pray every day for a miracle,to find out about some resource that I have not looked into. In the mean time I thank God for my son and my life,and try to have a smile on my face,forgiveness in my heart and hope for our future.
ReplyDeleteFiatangel, you deserve every wonderful thing life has to offer and you should never have to endure such treatment from anyone. You need to get your son away from there too. He is effected by this too even if most of the abuse is kept from him, he is still aware of it more than you think. I pray for God to give you the strength and show you the way out.
DeleteDocument as much of the abuse as you can, a journal that your husband can never find. Just one video of abuse is enough I think to have the courts fully on your side.
I am sending you and your son warm hugs and prayers. I am at work and just can't stop crying for what you are going through. Horrible people, just horrible.
Fiatangel, I am so sorry to hear about what you and your son have been going through. It sounds like a very difficult situation and I want to let you know that there are resources out there and people who can help you – you don’t have to try to get through this on your own.
DeleteYou can call our Information and Resource Center to get connected with your local chapter and resources in your area that could be helpful to you (1-800-344-4867). Our Specialists are available Monday through Friday from 7 am until 5 pm Mountain Standard Time. If you don’t feel safe calling, please review the other resources provided within Trevis’ post above.
Fantastic story, but so sad. It makes me realize how lucky I am to have friends and family who accept my limitations and are always there to help. we need to concenrate on positive people and not negative people. Thank you for a perspective that everyone needs to be aware of.
ReplyDeleteNot just MS......all disabilities deserve more respect than we get. I've actually gotten tired of trying to explain how hard it is to live "normally" with a disability.
ReplyDeletePhysical, mental or emotional abuse is in excusable. However, it does not always come from the care giver it can also come from the person with MS. There needs to be perspective from both sides of the fence. Many men and woman who love people with MS and other illnesses suffer the same things mentioned in this article at the hands of their ill spouses or domestic partners.
ReplyDeleteMy ex-husband of 9 years threw me out of our marital home. We had just moved into a new area and people didn't know me. I used to live in
ReplyDeleteAustralia. I was painted as the big bad loud mouthed New Yorker who drunk and got violent. That was the furthest thing from the truth. But because my speech was sometimes slurred or my walk not straight, I guess it was easy to believe. I was homeless in a foreign country where I had no family. My ex-husband's words to me as a goodbye was "I feel for you because your illness has gotten worse." Then his 5 year old grandson shut the door and the police escorted my car off the property. I was in a total state of shock and couldn't think. Couldn't figure out what to do except pray, pray to God. Church friends from the old neighborhood where we moved from took me in. It took me 2 years later to snap out of a deep depression. My divorce was given to me thru an email and it was finalized on September 11. For a New Yorker, that date was a double blow.