Wednesday, April 18, 2012

But you look so good

Susan Skoney

In my last vent, I was feeling very crabby about the host of problems that having MS creates. The problems have not been solved, but I am coping a little better. And, thank heavens, my mood has improved. Maybe because I got my hair cut and for the first time in my life, professionally colored and highlighted. I can see your eyes rolling and I can hear some of you laughing out loud. But it did perk me up, and I have gotten so many compliments, including the dreaded, “You look so good.”  

This got me thinking. What is so bad about looking good?  Remember Billy Crystal doing the Fernando Lamas shtick? His big line was, “You look maahvellous,” followed by, “It is better to look good than to feel good.”  There are many days I would sell my soul to feel better than I look or move, but neither will happen. So I’ll gratefully take any positive comment and just hearing it makes me feel better. Really, would you prefer people coming up to you and saying, “I hope you don’t feel as terrible as you look.” I wouldn’t. Do you think our discomfort with the “But you look so good” line comes from fear?  Fear that those around us have no clue about our pain and the struggle we have just to get through the day?
    
A few years ago, I was depressed and overwhelmed by MS and how it can turn your life upside down. I took to my bed and it was not pretty. It was also very disturbing,   especially to my kids and husband. One of my dearest friends, someone I have known since eighth grade, showed up at my house. Not the shy type, she came right upstairs and said, “What the H... are you doing? Auditioning for a role in a nursing home commercial? Get the H…UP!” She helped me shower, dress, put on my makeup and was completely oblivious to my complaining and whining. After pasting me back together, we had lunch, at which time she pointed out that I was one of the vainest people she knew (one of my endearing qualities) and even though I had MS I didn’t have to look or play the part of sick person.

She was right. I am vain. And I like to look good. So even on the days I’d be getting an infusion, I would start out in well-styled hair, lipstick and a nice outfit. Now the end of the day was another story, but when I arrived the nurses would all comment on my great appearance, which made me feel better, even if just for a little while. Having MS is bad. Looking good even though we have MS, in my opinion, is a GOOD thing. So, don’t be mad when people tell you how great you look. Thank them and tell them you feel maahvellous.


Susan Skoney was diagnosed in 1999. She lives in western New York with her husband Michael and children Hannah and Alex. She worked many years in public relations and advertising, and has just started writing about her MS in the last few years.

33 comments:

  1. Dear Susan,

    Thank you for sharing your story today. I can't tell you how many days I would rather just try to make it through the day, get up, get dressed, brush the teeth and take my medicines. Makeup? I don't think so.

    Told in 1988 and diagnosed in 1998, my body has taken over a lot of my life. In the bell choir at church, inevitably, one of my arms wants to SING out and ring that bell out of turn. I laugh or cry at the most inopportune time. My foot doesn't always make it up to the level of the stair or curb. I try to use my words but they don't always come. I aim for the door and ram right into the doorjamb without doubt.

    People look and wonder. Is she drunk? Is she abusing some drugs? She doesn't look like something's wrong. She can't go outside most of the summer. 90 degrees send her into a trance. Weird. She seems ok, but does these strange things.

    How are you today? Do you really want to know, or are you just being nice? It is such a good feeling, once in awhile to have someone ask that question and really mean it - they are really concerned about how you're doing. "I'm fine, thanks." See, I told you she looks normal.

    But there are plaques in my brain that have caused permanent damage to my ability to walk and not to have tremors or spasms in my arms and legs. I have them in my frontal lobe and I have difficulties describing what I mean or understanding what is being told to me, what I'm reading. Upset me and only consanants will come out of my mouth.

    I could go on, but I look normal. So I will normally go and post on my website and wash some clothes.

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    1. Wow, I though you were describing me to a T. I can relate to everything you are going through. I was told in 2003 about my MS. Thanks for sharing. I don't feel so alone now.

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    2. i truly understand i was told in 2006 about my M.S and told i have primary progressive. it has been a constant struggle i had a stoke due to inflimation brought on by my M.S and was a paraplegic from it but thru the grace of god and alot of hard work i can walk again for now. i liive in constant pain and always get told i look so good. they just dont understand how i truly feel or go thru everyday and when i cant somedays i occasionlly here from some that hes playing the M.S card and it really hurts to hear that. i wish they just knew how it was to feel this way

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    3. This also fits me. I have a special diet, and I like to play video games (Was going to work for a gaming company before I lost the chance- not sad about it, though! Us gamers- as long as we can play, we don't care.), and I've learned that most days it's as long as I can make my food and it tastes good, and as long as I can play a game for a while and go outside to be with Nature, I'm good.

      It's been difficult, and it'll get worse and then better... and then worse and better over and over again, but I can do it. I wasn't a strong person, or even a person with self-esteem before MS. I didn't even find my life worth anything. But now I am strong, now I have self-esteem, and now my life is my most important thing.

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  2. Thank you for saying this! These are my feelings exactly.

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  3. I was diagnosed with MS 12 yrs ago. The right side of my body is effected. When my leg is stiff I walk with a bad limp. I work at a convenient/gas/bait store, the regular customers have asked "what did you do to your leg?" when I tell them I have MS they all have said but you look so good. I just laugh and say "you should see me in the morning before the makeup"

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    1. That's me my right arm and leg have been a afected and people ask me the same thing..or if i trip they are like watch out and i'm like no its just me being me...and then they are shocked and are like but your so young and healthy.

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  4. My MS is always on my mind. It's hard for me to NOT think about it. I was diagnosed with MS on Friday, June 13, 2008, after I drove myself to the Hospital when I woke up and couldn't feel me entire Torsal area!!! My family, friends don't understand how I feel. I stopped going out over 3 yrs ago now. I have no one to talk to Here. I, too, stopped with makeup, doing my hair. I'm single and figure who wants to be in a relationship with someone who has MS?

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    1. Teresa, my wife and I were just living together in Sep 2008 when she was diagnosed. She had been talking about us getting married for about a year, and for reasons that escape my mind I wasn't sure about taking that step. Her diagnosis was the wake up call I needed to realize that she had been the best thing in my life since I could remember. A month later I asked her to marry me and got married in Dec of the same year and can tell you that I am happier now. We have our ups and downs since, as you know, the condition is very tough on her. But the great thing is that I married a wounderful person that happens to have a medical condition. My point is that you have to go out there to find that special person, because he exists...I did got out there and found mine...

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  5. Can relate to all of you! I was diagnosed in 1996 within days of my 52nd birthday, but a complete review of my medical history revealed my first major "relapse" occurred at age 19. So it was relapsing-remitting MS that I had been struggling with for decades! Now at age 68, I found it incredibly funny when a dear friend who wasn't really familiar with MS and wasn't around much (he lives several states away) after the diagnosis wrote recently, "but you're too young and too good looking to have something like that!" When I read that in his e-mail I had one of those LOL moments ... still makes me smile every time I recall it. I've even kept that email as a morale booster! Yes, throughout my life I've lived with the "but you look so good!" and found it to be a double-edged sword. I came to terms with it, though, long before my diagnosis (back in the days when I was relapsing, but misdiagnosed each time)when I realized I'm "borderline vain" ~ I don't let people see me as a rule unless I've gone to all the trouble of looking my absolute best. It hit me, "I'm getting the response I WORKED for!" And yes there were, and still are, times when I'd think, boy how I look doesn't even begin to relate to how I FEEL, let alone make it "impossible" for there to be something wrong with me. But on balance, I'm flattered and find that comment gives me a momentary rush of well-being and for that split-second I feel as good as I look!!

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  6. TeresaW. I am so sorry. Life with MS sucks, but sometimes you have to stopped trying to explain it to those who don't understand and start taking care of you. There are fish in the sea who would want a relationship with you but you have to take the first step to find something about you to love. Ok I'll stop...just keep your head up and know you are beautiful!

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  7. I appreciate these story's. It helps me quite a bit - I've only been diagnosed since fall 2011 at 44 years of age. I too, like many others, had not been acurately diagnosed and remember having symptoms of MS since I was young - junior high school age ish. Along with the 'But you sure look good' comments (which I appreciate) I've got the 'boy...you sure look a whole lot better than you did in December....you were looking pretty bad'. Really - I felt like $&#* but didn't realize I looked like it! LOL I can tell you....even though I'm not even 75% I sure feel 200% better than I did a few months back! :) I've learned the importance of trying to have a positive mental attitude - it helps...most of the time. :)

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  8. I'm vain too, but right now I wish I was not looking so good when I put on my makeup!! I am 50 and was diagnosed in 2007 - and at the time I was almost like "Thank God" as I had been going through Trigeminal Neuralgia, 'carpaltunel' in both hands at same time, abstract pain, bouts of 'can't get up', oh so many heart tests, oh so many circulation tests, my eyesight in my left eyedegenerating, being ostracized because of my emotional instability, you name it; the gist of being "I'm not a hypochondriac". In Dec 2008, I was laid off. The stress exasperated my condition. Within a year I had lost my 'so outrageously expensive' COBRA due to a foul-up by my ex-employer. More stress, more flair. I finally realized that if I went to bed on Wednesday, I may not be able to leave that room for weeks. I was still paying what I could to doctors, but I am of the mindset that "it's the MS, I know that, there's nothing they can do because they've said that all they can do is put me on MS drugs that I can't afford, so they can do nothing." In the meantimes, I am trying to both physically & financially help my daughter (who has Lupus & RA) and my 2 grandchildren. Then the unemployment stopped. I had already filed for my SOcial Security Disability (after all, I've worked 33 years of my 48 years). So now we have moved from our 4-bdr house to a small mobile where I stay in a RV in the back. My elderly parents have been my sole means of support (except I do receive food stamps) and they have suffered strokes, heart stints, diabetes, dementia, broken hip, continuous TIAs within the past 2 years. Now my SS hearing is coming up and I'm basically scared to death - I look so good. I can walk and talk. I can eat and dress myself most days. I can even drive on days. So how do I explain that I can't control my mind/mouth - whatever I feel is unleashed? How do they realize that yes, I can do those things today but who knows about tomorrow? How can I explain that I haven't gone to a doctor because I can't afford it? What do they know about the fact that I spend days between looking normal and having what feels like heart attacks that are in reality spasms? What about this all over pain that lingers all the time and the spasms that keep me up over half the night and the quarter size dead spot in my forehead that when I'm tired I can't convince myself isn't really a brain tumor? Why don't they know that I want to work but I just can't even put my clothes on some days and have to look at my drivers license to remember how to sign my name? I know I'm so very fortunate that I can function on many days; but to hold a job means showng up and meeting deadlines and getting along with people and remembering how to type or add or read. Some days it just doesn't pay to look better than we feel.

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  9. Dear Susan,

    I rarely read the blogs on the MS site but yours caught my eye because my wife and I were just having this conversation. We also had just come from lunch at a local restaurant where the owners know me very well. My fiends introduced us to another customer and mentioned that I have MS. The response, “Wow but you look so good” came out and I just nodded and smiled. So I felt compelled to comment on your blog post and to shed a little light on my own battle with MS.

    The reason for my response to your blog is two-fold. First: I was diagnosed with Primary Progressive MS on May 11, 1995. Spent a decade as a human subject in clinical trials at UCLA MS Research where I was re-diagnosed as RRMS. I endured three drug trials, Thalidomide, Linomide, and Avonex in a study of safety and efficacy injecting 60mg as opposed to 30mg of Avonex over three years. It was a failure as were the other two studies that I participated in. The Linomide study gave me thyroid cancer which resulted in the removal of my thyroid gland and lifetime hormone replacement therapy. I also did a three month clinical trial at UCLA for new MRI imaging and experimental gadolinium for 3D imaging of all maladies.

    In 2010 my MS became PRMS (Progressive Relapsing) and my career as an executive in my industry came to a close. I am now on Social Security disability as well as private long term disability from my previous employer. What MS has taken can’t be returned and what it continues to take can’t be stopped.

    However, in the nearly 17 years with MS I have never stopped to have a personal pity party. I am a certified peer counselor for the society; I have written several books and have my first novel in pre-publication. Now I have started to write my first book about my battle with this wasting disease. I am forever thankful that even with all the progression I am still ambulatory and for the most part can take care of myself. I am also thankful for Ampyra; the drug has worked miracles for me, and I am walking extremely well (though my cane is always nearby.) We all endure the wasting affects of MS in different ways and our symptoms are as varied as the stars in the sky, but the one thing that each of us battling MS has in common is HOPE…..no matter what else goes on in our bodies I have learned that no one can take away my hope; hope for a cure, hope for a treatment for the progressive population, hope that my children will not develop this disease and just general hope for a better tomorrow. Every night when I lie down to sleep I know that I have no guarantees what I will wake up to in the morning in my body. But I always hope that I will get one more good day in the sun.


    The second thing I noticed is that in many of the comments, people with MS remember the exact day and date of their diagnosis. And why shouldn’t we all remember? It was the last day we were “normal”; we were “healthy”. We now know the cause of whatever symptom brought us to the doctor. For me May 11th of each year is like a strange birthday. The day I stopped looking out and started looking in. I stopped worrying about myself and more about others. It was the day I grew up and realized that we all have an expiration date. It’s what we do with the time in between that matters.

    To all who read this post I hope no matter how bad you feel you will remember there is someone somewhere who feels worse. That you have the power over your life, that you have MS, it doesn’t have you. That even if you are alone you don’t have to be lonely and should never stop reaching out to people through whatever channels that you can for your sake and the sake of others.

    Roy A. Teel Jr.

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    1. ampyra has changed my life, but I still have some bad times, steps etc, and I had to fight for keeping it coming after 3 months free. Glad to hear it helps you, too.

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  11. I used to say to people "I wish I felt as good as I looked". Now I just wear less make-up on bad days and they get it. :-)

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  12. I want to get a pin made that says, "I may look good but I feel like crap." I will wear it when necessary! :)

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  13. Dear Susan: I can relate to the "you look so good" syndrome. There are people who I have just met who do not realize I have MS, but those who have known me a lifetime can tell the difference between the then-me and the now-me. ....Question: I note that you hail from Western New York State. I grew up in that part of New York (Jamestown) with my brother and sister. We all have MS, and know of a handful of people who we grew up with who also have the disease. I am very interested in the concept of disease "clusters" that might provide clues to the origins of the maladies. ...Any thoughts?

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  14. Your comment about your friends response to your having MS made me smile. When I was diagnosed officially in 2010, I was crushed and took to the couch and stayed in a fetal position. One day, my wife walked by and told me that she was on her way to learn how to run a 5k race and that I could come if I'd like ... "What was that about ?" I thought to myself ... "My wife had never run before.. not in a race .. not down the street". Well, to make the story short, I couldn't run or walk very far.. but I could still bike.. and that's what I did to help her train. Last week she finished a 1/2 marathon and I am proud of her. And I'm proud of myself knowing that I am able to bike several miles a week. I have learned that it's not what you can do that counts.. you have to work on what you can do .. JUST KEEP MOVING !!!!!!

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  15. Loved your article...I put on a 'good front' too, nobody can be in our shoes, bbut it does help to look good. They don't need to know what goes on in the privacy of our homes. I am a 58yr old married woman, have had MS 6 years, still go to the gym everyday for water arobics and stretch and balance classes. So keep up the 'good front', the alternative stinks! And how does get the privilege of writing an article?

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  16. Thanks for a very timely post! I just finished 3 days of IV steroids and, even though I was alone for most of that time, I made a point of dressing as if I were going to work every day.

    It always makes me feel better to look and act as if nothing is wrong, and I mostly try to take pride in the fact that people can't easily see what's going on with the constant pins-and-needles, MS hug, etc. I also made a fancy lace wrap to protect the IV port and bruises ... most people just thought it was a quirky fashion item. But it's all part of not letting "it" get the better of me.

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  17. All of these comments had me laughing, crying a bit, and thinking "thank god for all of you"! My theory is this: Thank Goodness everyone thinks we LOOK good. At least we have THAT going for us! One huge group of good looking sick folks - we rock!

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    1. Ha! I never thought of it that way before. I've been made fun of most of my life for something... and usually it was because I didn't "look" the way others "wanted" me to. But now I get that I'm just gorgeous all the time... ironic, huh?

      xD

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  18. Thank you so much for writing your article. You certainly described my life and issues. I also have fibromyalgia and and many days go by and I can't which is the disease that is giving me the problem for that day. Most of the time I don't care, I just deal with whatever is going on with my body at the time. I am 71 and still have a lot of interests and things I want to do. It is very difficult sometimes to just get up and move but I do because I hurt no matter what I do or don't do. Thank you all of you.

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  19. I have progressive MS. In 2010 I started on Tysabri. First infusion I felt wonderful, better than I have in years. They asked me to be in a JCV profile. When they got the results back from my blood work it showed that I was positive for the viris. That was in April. In June I had a flare up and was put in the hospital. They did a chest x-ray and it showed spots on my right lung. I was sent down for a cat scan the next day. I had just gotten bavk to my room when they came in and told me I was beibg moved to isolation. The infectious desiese doctor thought I had TB. The test was negative. After 7 days I was sent home. I had gone in walking with a cane but came out with a walker. A week or two later I started coughing up blood. Make a long story short in Oct I had an open lung biopsy done and it came back negative for every thing. I ended up have a third of my right lung removed in Feb.2011. They still don't know what it was that was eating my lung but most of my doctors thought it was caused by the Tysabri. Was it? I don't know but i do know that I haven't let this slow me down! I keep chugging away like the Little Engine Who Could!!!

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  20. I can relate totally ! I HATE it when people tell me how good I look, and I hate even more lying when they ask. I don't bother anymore ( unless it is a close friend or family member ) to tell them that I feel terrible when they say " you look great, how ya feeling?" I just say, " pretty good " total lie. So many people are totally oblivious to MS and what it can do emotionally to you. I had no clue myself until it happened to me. I always thought if you had MS you would end up with a cane and eventually be wheelchair bound for the rest of your life. It does upset me sometimes that MS is not in the Media or talked about as much as other illnesses. It hides in the shadows just like many of it's symptoms hide within us !

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  21. When I hear "But you look so good"I reply "But I'm so good-looking".

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  22. Thank you for sharing hard times that were followed by good advice. I believe much more needs to be focused on MS 'cause' and 'cure', and while I do not have MS, I understand MS very well. Likewise, I understand that dealing with issues you have no control of can be as painful mentally as physically. In 1988, at the age of 29 I was engaged to be married in five weeks when I was run over on my motorcycle by a truck running a stop sign that paralyzed me 100% from the waste down. Two days later my fiance gave me my ring back, explaining it was too much for her. I did not vilify her then, and will not now because in all fairness, it is not my place to judge another, so I focused on what was ahead.

    My Dad passed away from cancer six years before, so my primary concern was being strong for my Mom. I moved forward, but like anyone else, I had periods when I wasn't sure, but didn't want to spread that, so if someone came near, I would smile & and they back. It became genuine good medicine. It's amazing how powerful it is to be able to make people feel better, which in turn makes you stronger. I hope your pain is a minimum, a cure close to hand and pray that when you wake up each day, you can take back some of that which has been taken from you by saying that day belongs to you and you will fight for the night and the next day! Bless you.

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