The "Normal" Paradox

Have you ever been in a situation where you park in a disabled stall and then act worse than you feel when you get out of the car? I know I have. It stinks, too, because I feel like I need to "look the part" if I don't want to be judged.
 
Some days are worse than others, as we all know, but having to park on the other side of the lot in 90 degree heat would make this whole day a lot worse. I probably wouldn't even bother making the trip. So I act "disabled."
 
In a world of bullying and image issues, we all worry about being judged. It's something that we pretend to not care about – but we do. It's not just friends or people at the grocery store, either. It might be your employer or your insurance company.
 
I was recently denied my wheelchair request for insurance coverage. This may have been a “check the box” scenario for them, but for me it wasn’t a simple decision. I had to concede that I was no longer able to do the simple things I thought defined me as a dad and husband without help. I had to admit it to the whole world – starting with my doctor.
 
Sure, I have a cane. Truth be told, I have a bunch of them. The problem with MS, though, is that nothing works forever. I can't walk a straight line to save my life. If I go more than 20 feet without collapsing, it takes a half-hour just to get to the point where I don’t look and feel drugged.
 
But, I can "ambulate" with a cane. This makes me ineligible to be covered for a wheelchair.
 
Last summer I took my family on a vacation. At one point, my boys wanted to go shopping on "the strip," which we've done every year for the past several. I started the walk with them and turned back almost instantly. I knew I wouldn’t make it to the first shop and I didn’t want to deprive them of their fun.
 
Sure, I tried to enjoy myself and be positive about the situation, staying back and sipping my coffee. But I wanted to enjoy the day with my family.
 
It's getting to the point where I can't function without a chair. The further I try to walk with a cane, the more dangerous it becomes. I don't even bother anymore.
 
But I can “ambulate.”
 
So when I visit my doctor, I'm excited to show him how well I'm doing – how I’ve kept in pretty good shape. I'm independent and remaining optimistic despite my prognosis.
 
And I can “ambulate.”
 
After having the difficult mobility discussion with him, he sent me to physical therapy to discuss my options. I was honest about my immediate needs – I won't use it in the house. Why? Because it won't fit and I can lean on walls and take a seat whenever I want. The safety of the carpet and cushions has limited my injuries to a bloody arm and swollen wrist at this point.
 
And I can still “ambulate.”
 
Getting into my office or picking something up from Target is a different story, though. That apparently doesn't matter. I need to not act "normal" if I want to be treated like I have a disease. But wait... I don't want to be treated like I have a disease – unless the insurance company asks, I guess.
 
It’s hard to be optimistic when you’re always hiding from something. So, I continue to manage my situation and not worry about image – even if it means "playing the part" for those that only see a box to check.
11 Appreciate this
| Reply
Jim

Jim Turk

Jim Turk was diagnosed with multiple sclerosis in 2008 and has been featured in several publications and on TV. He has a passion for helping people make the best life for themselves despite their circumstances. If you want to learn his health and wellness tricks, get his free video course here.

Leave a Comment

Thanks for sharing your thoughts with the MSconnection.org community. Please note comments are moderated.

    56 Comments

  • Doralee   Feb 12, 2016 11:36 AM
    Wow,,,,,,everything you managed to describe talk about I've spent the last 20 years of my life doing,,,,,last night my board members discussed how well I am,,,,I guess I should appreciate the appearance image, but if there's a way for them to see the " no see ums " cheers you Doralee
  • Felicia   Feb 12, 2016 11:41 AM
    I attempt to do the same and now, it has become detrimental to me. Why is there a box?
  • Fiona   Feb 12, 2016 12:17 PM
    Really powerful article highlighting some of societies flaws. I find if I don't look disabled enough people feel they have the right to shout abuse for parking there!
  • Elizabeth   Feb 12, 2016 12:47 PM
    Please only be positive and do not worry about other's impression, Be true to yourself and also to those who you help. That is important part.

    Take care.
  • Sarah   Feb 12, 2016 12:51 PM
    So true. Sadly. I suffer from poor balance and painful feet, I mostly use a cane but sometimes know I could manage without it, if I could have the odd wobble and not have everyone think I'm drunk. Sometimes I know my cane is my 'act disabled'
  • Ricki   Feb 12, 2016 2:33 PM
    The line that REALLY gets to me is; 'but you look soon good!' what am I supposed to look like? A hand growing out of my forhead?
  • AnthonyBarkes   Feb 12, 2016 3:35 PM
    As a very active builder decorator wearing white overalls and an full collection of ladders-planks on my roof rack. I had announcement problems, I took on and completed huge contracts unaided. I planned and paced myself to perfection.

    Reluctantly I had to apply for DLA so I could have blue badge to park near-at my customers, having a heavy leg I appeared so drunk.

    This blue badge gave me my dignity. Unfortunately my customers feared for my safety, having admitted I was disabled.!! Paradox !

    Dignity, dignity is sometimes hard to find when you ask m/s just 5 more steps please and ms fails to reply. Just smile, there is nothing else left.
  • LuAnn   Feb 12, 2016 3:38 PM
    I was first tested in 81, diagnosed in 2000. I just got a handicapped tag this past summer. I was finding if I got to the grocery store and I had to walk across the parking lot, I would just turn around and go home. I knew there was no way I would have the energy to walk that parking lot, then go shopping, walk back across that parking lot and then put it away. But when I pull into that handicapped spot I feel like everyone is looking at me. I want to wear a sign that I have MS.
  • Kathy   Feb 12, 2016 3:39 PM
    Use those spaces. When walking, I didn't use them because of the same reason. Now I can't walk, drive a van with ramp and hand controls using the space now, no problem. Don't be stupid, use the spaces!
  • Avatar
    JimTurk  Feb 12, 2016 4:19 PM
    It is a big step, though, isn't it? The cane, the spaces, the wheelchair - all psychological leaps!
  • Craig   Feb 12, 2016 4:21 PM
    Your article was very perceptive and heartfelt, Jim.

    Our society, at least to some extent, lauds those who put themselves in harms way for the sake of others, but many of those same people fail to empathize with fellow human beings who are suffering from disease or other physical/mental challenges.

    Taking the major step to recognize and accept the limitations posed by a physical challenge is an ultimate act of courage, in my opinion. Lack of compassion toward those living with these challenges is cowardice at its worst.

    Your insights have clearly struck a chord with others who share your challenge. Please continue to share your innermost thoughts......they benefit all of us.


    May God bless you.
  • Sarah   Feb 12, 2016 4:21 PM
    That story sounds like a page out of my book. I hurt everyday with no relief. I continue to use the lord as my guidance, but boy sometimes its hard to make it through the day,fight with insurance companies about what meds you can have and cant have. In November I turned 37 and I no I have a long road ahead of me. I am turned down for ssi becauce of my hisbands ira its just crazy to me that disabled people who really need the help cannot get it. I have such anxiety over the fact that i am not able to help financially. At this point I feel that people with these types of diseases need a voice someone to fight for us. Feeling very frustrated...
  • Judy Erickson   Feb 12, 2016 4:38 PM
    I use handicap parking to save my legs for the journey, I can ambulate, but feel I too, am being judged.
  • Jen   Feb 12, 2016 4:44 PM
    Any doctor worth his salt will do everything in his power to get you that chair, but you have to tell him what he needs to hear to get the ball rolling.
  • Greg   Feb 12, 2016 10:23 PM
    I so get this Jim! It's been ten years for me now and considered ambulatory according to insurance company. I finally threw in the towel and purchased my own scooter to avoid the stressful arguments. This for profit system is rigged against us. The last thing we need is the stress induced symptoms of arguing with insurance companies. I guess we need to fall enough times and get injured on the record to get any relief. I am fortunate enough to absorb these out of pocket expenses occasionally. I wish you well in future endeavors and keep up the fight.
  • DJ Conger   Feb 12, 2016 10:47 PM
    I'm 7 years into this disease. I cope by ignoring symptoms (not the big ones--I get those taken care of). But my 6 month appointments are in spring and fall and I suffer through summer. Every summer I wish I had a parking placard. Like you said--I can't walk the parking lot AND shop! That's too much. But I'm hesitant to ask. Because some days, I feel great! But summer heat--that's a different story.
  • Laura S.   Feb 12, 2016 10:55 PM
    The older I get, the less I care about how anyone sees me. I have to live with MS, like you, and no one knows how we feel except others with MS. Stay strong, one day at a time.😊
  • Danielle   Feb 12, 2016 11:25 PM
    Good Luck Jim!
  • Theresa Shifflett   Feb 12, 2016 11:29 PM
    I can relate to your story.I feel like I have to look the part when I park in a handicap spot at work.My husband did not want to park in a handicap spot at first.Looks are very deceiving.
  • catherine shaw-redd   Feb 13, 2016 2:52 AM
    i have always looked normal and took a great deal of flack......like when i had to park in a disabled handicapped space because i had to take my born blind brother to his appointment and a man saw me, young and beautiful, walking along with my handsome brother and i heard him say to me, "you ought to be ashamed of yourself.....tsk tsk,tsk". Now, i am actually in a wheelchair but i wish i was my old self again, tough as it was! This is tougher! Progressive is worse!
  • Patty   Feb 13, 2016 6:34 AM
    Please talk with your doctor. You need their records to say you are not ambulatory. If your carrier then denies the wheelchair or scooter, appeal & if that doesn't work, go to the state insurance department. I have a scooter. The people at the company that my doctor's office works with to get the scooters/wheelchairs told me it often also depends on what is in their records. When you meet with them, don't say you won't use it in your house. The carrier is not going to spend the money to have someone watching how you are using it. Good luck!
  • Carrie Meyer   Feb 13, 2016 7:29 AM
    My husband was in the same situation. It's awful. We finally sold a car and used the money to buy his first chair that wasn't a folding chair on wheels. Insurance finally got the picture and joined us as a partner in care instead of being an adversary. The light at the end of the tunnel for him is that now we can park at the furthest reaches of parking lots and roll into stores. HE gets to glare at "normals". If he's feeling feisty, he will mutter loudly about how lazy people are to park so close. It's reverse shaming but it does make some people stop and chat about why he parks so far away--because he CAN!
  • Rhonda Lake   Feb 13, 2016 9:35 AM
    I do not have MS,but have 5 family members with it 2 of which are my sister. It is a shame you have to do/act/feel this way. MS is hard enough on a person. All that can be done until a cure is found is to educate people. I will be walking my 15 MS Challenge Walk on Cape Cod ,raising money so I cure can be found for you,my family,and anyone with MS
  • Caroline   Feb 13, 2016 10:40 AM
    No one else other than someone with MS gets this, we even protect our family from how we really feel.
    I applaud your determination and understand why you strive to be as independent as you can. I to have done the same in a disabled bay, even on a good day when you feel that you cam have a moment of normal you feel you have to fit what they expect to see.
    But we keep positive to keep going and with the progress being made in clinical trials, who knows we soon may have a cure - fingers crossed.
  • Jacquie   Feb 13, 2016 11:50 AM
    Your talking about myself ...... aren't we amazing 😊
  • Wendy Warren   Feb 13, 2016 12:07 PM
    I understand why you do this, but it has consequences for more than just you. It's important to be honest about what you can and can't do because so many people think that MS doesn't affect people severely, and this is out there all over. So those of us that can't walk and need a wheelchair are a lot of times questioned. Why, it says that you should be able to and there is all this medicine you can take. ... I'm sorry but I just don't think that by not being upfront about your experience that you are helping yourself or others.
  • Jill   Feb 13, 2016 2:04 PM
    I was diagnosed in 1989 and was in good shape until about 1997-98 when MS started to whittle away some of the things I could do myself, like walk unaided. First was the cane, then the walker (not long) and now I am in the chair 24/7. Of course, we used the handicapped parking wherever we go. I have been through a lot with this disease and if that is the only good thing I get - I'll take it. People give me looks sometime and then my husband gets the wheelchair out and they change their attitude. Another thing I find interesting is when I am waiting for the handicapped restroom in a restaurant, etc. and then the fully ambulatory person walks out and sees me - then the look of shame. I guess I shouldn't assume they don't have an affliction but the majority of the time I am sure they don't.
  • Zahaitun   Feb 13, 2016 7:14 PM
    I just want to live this life like others
  • Autumn Neugent   Feb 14, 2016 7:16 AM
    Jim, I can relate!!! Ugh! I have so much love and respect for you!!!
  • karen hawkins   Feb 14, 2016 9:58 AM
    I use my cane as needed i have comments if someone is rude but nero forgot handicap parking sign
  • Veronica   Feb 14, 2016 12:25 PM
    I, also, can totally relate to what you wrote. I'm newly diagnosed over the past year and family and friends (even the love of my life, who is no more because of this very reason) don't see the pain and exhaustion because "you look so good." So, sometimes, yes, it's just easier to look and act the part...because if you're not lying comatose in a hospital bed, then you must be OK! Sounds like you have a supportive wife and children. God Bless!

    P.S. Please check out Ann Baroch's book...Healing Multiple Sclerosis...it is a MUST for anyone with MS because it most likely will provide you with much information that is not in the mainstream.
  • Jennifer Boyd   Feb 14, 2016 1:18 PM
    so completely helpful & I can totally relate.
    it's like I have to put on a "sickie" skin for my lawyers and my doctors or my insurance company reps... but then I don't want to be that sick with my family and my friends. Its complicated isn't it?
    My doctor flicked nice lack about my wheelchair to but I explained to her that my energy is precious and I cannot afford to use it walking when my family needs me and I need to not poop out on them at 12 or 3 and then they have the whole rest of the evening without me... My church loans me a wheelchair and that is the reason why I can go to my boys football games again and ride the bus again and go shopping again. it's kind of a sticky situation for us, I think, as a culture.
  • Kristy scott   Feb 14, 2016 2:48 PM
    Thank you we are all in this together
  • Lisa   Feb 14, 2016 3:54 PM
    I was diagnosed 3 years ago and just got a Disability Parking Pass recently. My doctor suggested that I use it only on my bad days. I do not look like I need it and don't really like to use it but sometimes it is just necessary. When I'm struggling a little with walking or I'm completely exhausted, that is when I use it. My Aunt was diagnosed with MS 25 years ago and I didn't understand MS until now. Many people do not know much about MS including myself.
  • Armin Cooper   Feb 17, 2016 10:56 AM
    I was diagnosed with MS last year and I've been doing everything I can to fight off the disease. I just realized the other day that my sister, who I live with, can request the ability to park in those blue parking spaces. She often drives me to the store and that might be helpful for us. In the meantime, I will keep walking as best as I can when the weather is not too difficult. My father, who had Lupus, taught me to always keep an open mind no matter what we see with our eyes. MS is a good example of why this is important. I may not look like I have an autoimmune disease but there are times when I certainly can feel it within my body. We all must do the best we can in this world.
  • Stephanie Wylie   Feb 18, 2016 1:45 AM
    Jim I can see you have a lot of courage to keep your life and family living as normal as possible but try to remember each day is precious. I lost my husband a year ago and Ron had M S since 1968. He had slow progressive which meant he slowly lost all his motor skills through the years. I keep him at home with me our entire marriage which was since 1968. He was a hero in my eyes and his family and friends. Because he had it so long he didn't get the benefit of all the new drugs that have stopped the progression so he was in a wheelchair by 2992 and a bed by 2005. He could not move any of his body or talk for at least 10 years before he died but I can tell u he still had s smile on his face everyday and our family supported him in every way. God also was a big part in our lives and I felt blessed by his quiet and loving spirit. Today after a year I smile knowing he is in good hands with the Lord and pray all of u that have this challenging disease can continue the good fight cause life family and God is what it is all about. God Bless You!
  • Amber lee   Feb 19, 2016 2:06 PM
    please take a moment, anything helps

    gofundme.com/helpfightms
  • Ann   Feb 20, 2016 9:48 AM
    I use my disabled tag to park more than I thought I would. I, too, can ambulate even if it's not a smooth walk. However, I can't walk well for long distances and have balance that is compromised by my weakened right leg. I use a can when I go out since it does give me a more confident walk and I hope that people will see it and not accidentally knock me down. I can't count the times when I'm out that I have had to just stand still while people rush around me or turn corners too fast or close as they come toward me.
  • Anonymous   Feb 20, 2016 4:43 PM
    The relentless national media campaigns that seem to minimize this terrible disease are an overwhelming problem for those who actually have MS. The neurology clinic at my hospital is packed with people who are struggling along, yet look "well" enough that they are expected to function normally.

    Also, as the years pass, MS is highly likely to progress. This unfortunate fact almost never seems well-publicized due to the supposed availability of "medicines" that will magically set things aright. (People should certainly pursue treatment if they choose to do so, but the general public is not aware of treatment failures, side effects and risks, and so on.)

    Campaigns that show how "well" certain patients are doing work against the majority of sufferers. And too often, those profiled in said campaigns are not going to remain "well."

    MS is a very serious diagnosis, and should be treated as such from the get-go.
  • Anna   Feb 20, 2016 8:31 PM
    Enjoyed your post!
  • Jacqui   Feb 25, 2016 8:28 AM
    I'm not about to try and fake feeling bad, I feel bad enough as it is most days.
    I park in handicap parking spots because I have a legitimate handicap placard and if anyone wants to make a remark to me about it, I'll be more than happy to walk up to their face and answer any of their ignorant questions!!
    It's happened a couple of times over the years and believe me, those who commented, were not happy to deal with me!!
  • penni burt   Feb 25, 2016 10:11 AM
    going to the store is painful walking the parking lot I don't drive so I tell everyone I;m going to do what I can until my legs cant carry me my family told me to get a handicap parking they hate to see me struggle when I go to the store you always see people use the handicap parking and they walking great or they use the carts inside, I get many people tell me that's what carts are for people like me to use and make it easier for us to get around but then you see others use them because they are just their I guess people with dissablies try to do much for them selfs as much as possible I LIKE TO TRY TO DO THINGS THAT I USE TO DO I HATE HAVING SOMEONE HELP ME IM VERY STUBBORN I KNOW I WILL HAVE TO RELY ON PEOPLE SOME DAY BUT TODAY ISNT THE DAY
  • marsha michaels   Feb 25, 2016 6:50 PM
    This is typical denial on your part. I went through the exact same feelings with the first cane, the walker, finally the scooter and now I am somewhat ambulatory with two canes in house and for a few feet. I succumbed to a Bruno Lift on my stairs. I remember crying every step of the way until I realized all the aids are to give me a fuller life. I'm going to be 70 at the end of the year and I look fabulous because I know longer fight what is a reality.
    I'm hoping a small robot will be able to pull up my pants, as my legs and balance aren't trustworthy. The falls are the worse, so pull up your big boy pants and use the aids!
    Your neurologist can insist your insurance pays. Call the Society in your area for help if need be.
  • Avatar
    oldhippie  Feb 26, 2016 7:53 AM
    Wait were talking about me?? I know you aren't but what you say describes me on a good day. I also have multiple cans a walker and am trying to find the money to get a scooter(my insurance will not help) so I just keep retuning pop cans and saving my pennies and one day will get my scooter.
    As far as looking the part, I don't even try anymore if someone feels the to judge me come tell me right to my face (I will not hide) and I have truly come to the point I don't really care what any of them think. If they are so much better the me, then do something and fix the problem so we all that suffer with this disease can get back to living without the aids.
    I my self do hang back, don't go out with my family a lot (as yesterday) I stayed home and did not go to the book store with them, it had just gotten to late in the day. When they started talking about going it was about 11:30 in the morning and I felt fine, but at 5:30 in the afternoon I no longer felt much like doing anything (the fatigue had set in) and it takes me out of the picture and down for the count.
  • Avatar
    marshina  Feb 26, 2016 8:37 PM
    I used the Bay Area Society that hooked me up with a man giving away the Bruno Lift his wife used but had passed. It was most likely $5,000.00. I was fortunate. I use Spinlife.com to purchase my scooters. With Pay Pal, I had a year to pay it off with no interest. There are many used wheelchairs and electric scooters. Check Craigs list. Right now I have a used Pace Saver Scooter, that I'm selling for about $500.00. The exact new one cost me $3,000.00 I used Pay Pal and paid for it over time. Many cities have rentals. One can use for a day or longer if you want to do something that will fatigue you out. Put an ad in Craigs list asking for what you need. You might be surprised what people have and not know what to do with.
  • Cherri   Feb 27, 2016 6:17 PM
    This rings so very true for all of us that have a "handicap" of "to ambulate or not to ambulate" scenario. MS or no MS. Thank you for being open with your situation. Sometimes it helps to know others understand. 😊
  • margaret miholick   Feb 28, 2016 4:02 PM
    I feel the same way, concerned that others may need it more than me. Here is what I remember, my doctor told me to save my steps, use what you have to do, if not conserve them. He is right, I do not walk unnecessarily. I do not want to get caught someplace and not be able to get out. This has happened. I also want my energy to exercise. The truth is when I get out of my car I usually can not walk well. Also had enough of the "are you drunk talk" want to say not drunk enough
  • Haslie Kemp   Mar 2, 2016 7:42 AM
    If you cannot change the people you want to change, change the person that you can change and have the wisdom to know it is you
  • Avatar
    gjlisGLORIA  Mar 8, 2016 1:43 AM
    This was good to read and thank you. On those days when I am feelimg pretty good I actually feel a twinge of guilt getting spryly out of the car. If others could only live in my MS skin for a day, they would understand.
  • Kathy   Mar 9, 2016 4:21 PM
    I have a handicap placard and I use it everyday. I get random "M.S. Hug" that is so severe it reminds me of birthing contractions. Yes basically it feels like I will give birth to something through my right rib cage. Since I never know when it will occur I park in the Handicapped space. I'm often fine but on the occasions when it hits hard I can barely make it to the car because the pain is so intense in my ribs. Nothing to do with my legs just my ribs so there is no way for it to sound reasonable to anyone. Once I'm in the car I'm so grateful for it. Yes ignore what people say and think.
  • Timothy Muck   Apr 1, 2016 5:19 AM
    Thanks for your comment. It has provoked a fair bit of thought. "Seeing", or in my case, hearing the disease and way that the disease negatively affects my ability to make appointments d how it affects
  • marty seamen   May 15, 2016 2:19 PM
    My name is Marty 63 diagnosed 30 yrs ago.I went from walking to a cane into a walker and eventually a wheelchair.Reciently i was invited to dinner with some close friends, when i arrived i noticed there was two steps up to get in the restaurant i called the american disability act and they told me there must be a ramp put in for people that are disabled and there must be a handicapped bathroom, its the law. they were able to have this work done and many other violations fixed. Now i can enjoy a night out and experience the same feeling as everyone else.I you feel your rights have been violated call the ada for help 754-715-9860
  • marty seamen   May 15, 2016 2:19 PM
    My name is Marty 63 diagnosed 30 yrs ago.I went from walking to a cane into a walker and eventually a wheelchair.Reciently i was invited to dinner with some close friends, when i arrived i noticed there was two steps up to get in the restaurant i called the american disability act and they told me there must be a ramp put in for people that are disabled and there must be a handicapped bathroom, its the law. they were able to have this work done and many other violations fixed. Now i can enjoy a night out and experience the same feeling as everyone else.I you feel your rights have been violated call the ada for help 754-715-9860
  • marty seamen   May 15, 2016 2:19 PM
    My name is Marty 63 diagnosed 30 yrs ago.I went from walking to a cane into a walker and eventually a wheelchair.Reciently i was invited to dinner with some close friends, when i arrived i noticed there was two steps up to get in the restaurant i called the american disability act and they told me there must be a ramp put in for people that are disabled and there must be a handicapped bathroom, its the law. they were able to have this work done and many other violations fixed. Now i can enjoy a night out and experience the same feeling as everyone else.I you feel your rights have been violated call the ada for help 754-715-9860
  • marty seamen   May 15, 2016 2:19 PM
    My name is Marty 63 diagnosed 30 yrs ago.I went from walking to a cane into a walker and eventually a wheelchair.Reciently i was invited to dinner with some close friends, when i arrived i noticed there was two steps up to get in the restaurant i called the american disability act and they told me there must be a ramp put in for people that are disabled and there must be a handicapped bathroom, its the law. they were able to have this work done and many other violations fixed. Now i can enjoy a night out and experience the same feeling as everyone else.I you feel your rights have been violated call the ada for help 754-715-9860
  • marty seamen   May 15, 2016 2:19 PM
    My name is Marty 63 diagnosed 30 yrs ago.I went from walking to a cane into a walker and eventually a wheelchair.Reciently i was invited to dinner with some close friends, when i arrived i noticed there was two steps up to get in the restaurant i called the american disability act and they told me there must be a ramp put in for people that are disabled and there must be a handicapped bathroom, its the law. they were able to have this work done and many other violations fixed. Now i can enjoy a night out and experience the same feeling as everyone else.I you feel your rights have been violated call the ada for help 754-715-9860