In the show "West Wing" Jed Bartlett somehow runs the nation. The show "House" they simply prescribed an interferon and leave it at that. Michelle Obama talks about her dad always getting up going to work and never once complaining.
Hmm? No pressure to express what on is reeling and we can tell that pharmaceuticals have made us all better.
I know expressing anything negative gets old quickly.
But sometimes voicing it makes it more tolerable, whereas if you don't say anything it can fester or no one is aware you are in pain and they have to walk slower with you as I found out on my last trip
I get what you're saying. The mind over matter thing. Pull yourself up by your bootstraps.
I don't want MS or anything. A diagnosis of MS stinks. What really stinks is having no medical reasons for your symptoms. I've been told that I need to get up and do something and it would make me feel better.
I do get up and drag myself to work each day. I have nothing left by the time I get home. Weekends are for the most part spent recuperating and regenerating for the upcoming week.
I don't want to be negative. I want to have a life other than work. I think the examples you listed, while perhaps meant to be motivational, make people who live it pressured to live up to sometimes unreasonable expectations.
I tend to agree that the media seems to marginalize MS. While they made a huge noise when Jack Osborne was dx'd, the final thoughts were that he was going to be fine.
We are "blessed" with a disease that is invisible to most. Before getting it under control with meds, my neuropathic foot pain put a serious crimp in my style. But If you saw me standing on the subway you'd think there was nothing wrong with me. When I was lucky enough to get a seat, and there was a pregnant lady standing in front of me, I would get really nasty looks when I remained seated.
"Nobody knows the trouble I've seen" But the media says it's not that big a deal?
I worry less about the way others see me and my MS than I do about how I feel about my MS. I am going to live my life respecting the limits that MS has established, but doing every thing I can to keep those limits as far away as possible. My MS allows me to get up every morning and go to work. It allows me to get on the treadmill every other day and walk for 45 minutes. It allows me to do a whole bunch of stuff :-)
I don't spend any time worrying about the next symptom. We can't control it, so why waste any energy on it? If the media says MS is no big deal, maybe I should agree and get on with my life :-)
The other factor affecting media portrayals of MS is something we say to one another often: no 2 cases are alike. Certain symptoms are common, but none are universal. None are definitive, either, so whatever is wrong with my sitcom or soap xharacter might sound like Lyme disease to half the audience.
"Why, my cousin Maybell's uncle's grandma had MS, and she couldn't hold her own supper!" We've all heard something in that ballpark, too.
So agree McB with your message. You've nailed it in such simple terms by stating "..media has made MS seem easy to handle"
While it's true we can chin up, count our blessings, feel fortunate for available modern medicine live w/out self pity, put on the face.,,etc.
But, at its core, it's what it takes to do this daily is under if not completely just not reported.
Feel that's exactly why we rely on each other here for "all the unsaid inbetween."
It is always interesting to see how the media portrays MS, from the fictional characters such as West Wing's Jeb Bartlett to real MSers such as the "self proclaimed heroic" Montel Williams, the disabled Annette Funicello, the tragic Richard Pryor and of course Jack Osbourne.
The truth is, it is very hard to portray the "real" MS because we are all so different. Sure we have so many things in common which allows us to share on this wonderful forum. However our differences also vary greatly.I am so happy for all those blessed with invisible looking MS. I wish I were able to walk independently. I wish I was still able to work. I wish MS hasn't robbed me of a productive quality of life, but it has. No I don't sit around feeling sorry for myself. I do what I can to keep me from regressing even further... Taking my meds, exersicing, eating healthy and going to physical therapy. I also send time with my wonderful family an may supportive friends.
It is near impossible to portray something as abstract as MS. I have seen few portrails of Cancer which touch what I experienced this summer. Most are cliches in comparison to the real thing. Talking to Cancer patients I met those who did go to work during treatment. I was holding on by my fingernails to stay alive. People are different.
I am now back to work in spite of MS and cancer. I have to earn a living. My bank account is empty. I take a lot of pain pills and stay up nights in pain.
I don't think complaining all of the time helps, but neither does having a stiff upper lip when you are really suffering. MS is so variable--in one person from day to day and with others, that it's hard to say what's best for the given moment or person.
If we suffer in silence, this is no good. I remember a time when my pain was so intolerable that I did feel like Montel and wanted to end it all. It is important at these times to have a good supportive system. I do think the daily pain and the difficulty walking made it impossible for me to be positive.
It is important to have a diagnosis, first of all, and to get help. During that time period, I didn't have a diagnosis, which made it very difficult to get pain management and feel hopeful. It is very important to get the correct support and if isn't coming from home, then to seek it through counseling. I was driving away my friends and my husband, as wonderful as he was, was getting pretty weary. Complaining all of the time, crying in agony, and throwing adult tantrums always set me back. MS stinks, especially when living in that kind of pain or feeling hopeless from either disease progression or lack of diagnosis.
I guess getting some sort of support in dealing with pain, would be absolutely necessary. Having a stiff upper lip in that situation, in my opinion, couldn't be done.
Getting the diagnosis was a turning point for me. Now I can work through the pain and get treatment when it is unbearable. I do not feel that kind of pain anymore, thank goodness!
I do try to stay positive as often as I can . . . I always want to think of my husband and family who has suffered so much with me. I know they love me and don't want to see me hurting. It does help sometimes to get up and move. I get a lot of pain from just sitting around. The spasticity seems to be worse. Additionally, there have been days when I have been distracted by the MS symptoms because I made myself be busy. Other days, that is impossible. I always ask for help on those days and try to stay positive.
I just read this over--sorry to be so scatterbrained! It's late and I don't think I can fix it, but wanted to chime in! What a great topic!
At the risk of sounding like a broken record, I will once again recommend Barbara Ehrenreich's excellent book, "Bright Sided: How the Relentless Promotion of Positive Thinking Has Undermined America."
An excerpt from. NY Times review:
".........this newest volume is based on her stay in a world that she became intimately familiar with: the smiley-faced, pink-ribboned, positive-thinking culture that surrounds breast cancer patients.
Ms. Ehrenreich found out she had the disease in 2000, and the news left her dazed, fearful and, most of all, angry. What she found when she sought information and support, however, was cheerfulness, and that shocked her.
“There were exhortations to be positive,” Ms. Ehrenreich said.
..........The unrelenting message was “that you had to be cheerful and accepting and that you would not recover unless you were,” said Ms. Ehrenreich, who also writes frequently for The New York Times. Most infuriating, she added, was the advice to “consider your cancer a gift.”
Every rosy affirmation — the advertisements for breast cancer teddy bears and other tchotchkes, the inspirational slogans (“When life hands out lemons, squeeze out a smile”), and the politically correct language (“victim” and “patient” are avoided because they suggest passivity) — sharpened her keen sense of outrage.
“I have to say I took it personally,” she said. At one point she wrote a rant on Komen.org, a Web site that focuses on breast cancer education and research, about her anger over environmental carcinogens, endless battles with insurance agencies, toxic treatments and “sappy pink ribbons.” She recalled a typical response to her post: “You need to run, not walk, to get therapy. You can’t get better without poisoning your system.”
Her eyes widened at the memory. “If I don’t get better, it’s my fault,” she continued. “It’s a clever blame-the-victim sort of thing.”
I highly recommend this book. It's validating for anyone with a serious disease who feels annoyed/offended/outraged/silenced by those who cheerfully chirp that one must, at all times, "stay positive!!!!" and thus, deny oneself to feel and to express the full range of normal, natural emotions that come with the uncertainty of living with a chronic illness, coping with constant discomfort and pain, and feeling a loss of control over one's own body.
Thank you for posting this. I don't know what I have, yet it is something and it stinks.
I am going to get that book. I too resent the idea that if I don't feel better it is somehow my own darned fault. I have been trying to find out what it is, because I do want to know so I can treat it. I know it isn't my fault, yet when someone tells me I need more exercise and to think positive I want to throttle them.
No, I don't want to be a big complaining downer all the time, so I don'tsay much even to family. I do want people to realize that sometimes crap happens and I isn't because I am being punished or somehow because I didn't exercise enough or take the perfect supplements I am being punished. I know people who don't exercise at all and have awful eating habits who be-bop through life just fine. Or at least they can go out on outings and have fun without having to leave early.
At everyone.e - Keeping it all in makes you blow up. That goes for flatulence & health issues, &
If ur friends & Fam get sick of it, then rant on here - Besides, a new & reliable study (that my chronic confusion won't let me find the link to) shows conclusively that complaining is good for u, & the stiff upper lip-pers don't last quite as long.
And if ur internet goes down, & there's no one to vent to? Well, my pets are awesome listeners, & so are the potentially eavesdropping ghosts of my deceased grandparents!
Nancy thinks I'm nuts cuz I talk so much to Annie & Bandit. I figure I'll give them the benefit of the doubt, and tell them whatever I want. If they understand a few percentage points of it, I'm ahead of where I would have been if I hadn't bothered.
They now know outside, water, bowl, bed, couch, get down, stop, stay, several people's names, bath, upstairs, and I am sure a lot of things I can't remember at the moment.
Bandit seems to be the better counselor, though. Annie's too hyper and worrisome. Bandit's more of a "Don't worry; be happy!" kind of guy. Nancy says they both got their personalities from us, but she's not nearly as self-centered as Annie.
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