We Shouldn’t Have To Prove That We Really Do Have MS

We Shouldn’t Have To Prove That We Really Do Have MS

Yes, I look good. I mean for having MS. But I do have it, believe me folks. Ask someone who knows me best – my husband.

  • Fatigue. I have to plan my daily schedule around “fatigue time.” My body tells me when that is – anywhere between 1pm – 2pm. It begins to shut down when I can’t walk or think straight, and that means I need to put life on hold by napping. If I push through it, which I sometimes have to do, I pay for it later.
  • Numbness. My right leg and foot are almost completely numb. They’ve been that way for almost 20 years. Imagine what it’d feel like to have a few ace bandages wrapped around your foot, and then you have to walk on it. It’s not too numb that I can’t drive or walk, but it’s numb enough that it’s difficult to feel my toes when I try on a new pair of shoes and the salesman asks how they feel. I’ve lost the ability to run, walk long distances or balance well. When my foot is tired it begins to drag and drop, and sometimes I fall. That’s when I know it’s screaming for me to rest. So I do.
  • Shaking. My left hand shakes when I’m feeling stressed or tired. As a writer that can be irritating because my fingers inadvertently type a letter on my laptop when I’m in the middle of writing. It can sometimes be funny, in an annoying way.
  • Spasms. My feet and calves have painful spasms when my toes freeze into place in the strangest looking way. I have to “wait it out” until they pass. When my husband is there he stays with me to soothe and calm me down. I love his voice and that always helps.
  • Cognitive. I forget things. That’s not easy to admit. I was raised by parents who thought a good education was worth its weight in gold and who, in their eighties, are still voracious readers with minds as sharp as tacks. But, as I recently wrote in my own blog, between aging, a traumatic brain injury and MS my brain has been battered around. Sometimes I have trouble finding the right word, remembering where I put the car keys, or what I did last night. Sound familiar? It happens to most of us, but with the trifecta of possibilities why it’s happening to me I’ve decided to keep my brain as active as possible to keep it elastic.
  • Itching. With no mosquito bite in sight there’s that crazy itchiness that many other MSers experience. You scratch the itch until the skin bleeds. It’s not serious but it’s ridiculous and, yes, annoying.
  • Lower self-esteem: There’s the inability to keep up with others in the pace of life in order to fully enjoy it. I’ve had to say no or cancel too many social engagements over the years because of MS. I yearn to do so much more in my professional life but MS gets in the way. Sometimes it gets to you, and you have to remind yourself of your blessings and be grateful for all you do have. And meditate.
  • Vision: Those irritating floaters that increase every year. The type that makes you jump because you see something large looming in the corner of your eye. Agh!

There are other issues that are bothersome as well, but the ones I’ve written about are my main ones.

I’ve had people lecture me about using my handicapped placard because I’m not disabled. Others say they’re jealous because of the outings I get to enjoy. Still others don’t realize, or think about, how my world is affected by MS. The truth is that it is. Every single day. Ask my husband. He’s at my side when I’m at my best and worst, and everything in between. He knows what it takes for me to get through an ordinary day. I am blessed to have him as my lifetime best friend.

Through education and awareness, and especially compassion, the world would be a better place for people with MS. Hear us, listen to our stories and feel what our world is like. If even for a few minutes. We’d sincerely appreciate it.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (45)
  • Nanny to 4
    2 years ago

    OMG, this sounds soooooo familiar. I know people don’t believe me when I look completely exhausted. The other day I was at the grocery store and I told my caregiver I was on my last leg in the store. (they did not have riding carts). I got to the counter then I thought I was going to collapse! They got me a chair to sit in but I had to get to the point of exhaustion before it seemed real to them. Believe me, I would give almost anything to be sort of “normal” again instead of “looking normal” but at times feeling sooooooooooooo bad. I am 70 yrs old and not look it by the grace of God. Believe me, I know the phrase well “But you look so good” .So, to other MS’rs hang in there and we can do this!!!!!!!!!!!!

  • nancyprn
    2 years ago

    I try to ignore the stupid comments. Otherwise, I might stay pissed off at certain people. I just tell myself they don’t know any better and don’t take it personally.

  • thumper
    3 years ago

    Funny you should mention this. I recently went to the grocery store where I always use a Handicap spot with my Placard. I noticed someone looking at me as I got out of my car. At that time there was a cart near by so I walked with it instead of my cane.I’m sure I looked able to walk normally to this person, but I marched into the store! It was also a cool morning “so far so good”! By the time I finished shopping it took everything in me to get to my car! And that Same person was waiting to see I guess “How I was Walking”? They nodded at me like they Validated my using the Handicap spot! I was ready to use some Inappropriate Sign Language, but thought I’m better than that! People-We Really Don’t like using these spots! Try to Believe this!

  • cabotsmom
    3 years ago

    Well I have been diagnosed for 14 years and knew I had the monster for many years prior but for economical reasons could not divulge until couldn’t hide it anymore. New neuro made me have an MRI (Obamacare insists) to show I have MS! Seriously??? I never knew it could go away. So I told her I will have this one (I had a huge copay here people which could have gone to something more prudent) but NEVER again. Apparently Big Insurance doesn’t think I might need my drugs as I may not have MS? I think it is of the utmost importance that everyone in Big insurance who makes the decisions for the docs and Obamacare live with this miserable disease and then tell me I need an MRI to prove it! Nice folks at the center but told them they weren’t going to see me again as I am pretty sure my MS didn’t take a hike and no more proving I have this dreaded disease.

  • cabotsmom
    3 years ago

    Well I have been diagnosed for 14 years and knew I had the monster for many years prior but for economical reasons could not divulge until couldn’t hide it anymore. New neuro made me have an MRI (Obamacare insists) to show I have MS! Seriously??? I never knew it could go away. So I told her I will have this one (I had a huge copay here people which could have gone to something more prudent) but NEVER again. Apparently Big Insurance doesn’t think I might need my drugs as I may not have MS? I think it is of the utmost importance that everyone in Big insurance who makes the decisions for the docs and Obamacare live with this miserable disease and then tell me I need an MRI to prove it! Nice folks at the center but told them they weren’t going to see me again as I am pretty sure my MS didn’t take a hike and no more proving I have this dreaded disease.

  • Kristina
    3 years ago

    Great article! I’m 37 and have had MS for 18 years now, and I’ve lost track of the number of times I’ve been told I shouldn’t be using my parents/grandparents handicapped placard. It’s funny because my parents have never owned a placard. It used to make me cry when I was first diagnosed that people could jump to conclusions so easily. I really should just wear a sign that says the many things that don’t work right in me.

  • lilnic1973
    3 years ago

    Thank you all for the much needed information and support during a very confusing and stressful time for me. I have not been diagnosed with MS but over the past five years I have experienced all of the symptoms..the itching has been a recent symptom that I just thought was dry skin. I am 42 years old and have memories of going to Long term care to visit my grandma every Sunday until she passed away due to complications of MS. She was paralyzed from the neck down and that scares me. I know that MS is more manageable now than it was 20 years ago, but having memory problems, falling down, blurred vision or spots, fatigue, numbness, leakage at times, and anger or anxiety all at once when I used to be very healthy is overwhelming right now. Thank you for allowing me to get it out and I feel relief in doing so. I know that you get it!

  • Nanny to 4
    2 years ago

    lilnic, try to get diagnosed as soon as possible. If so, you should be on a MS Therapy. If money is a problem (as with all of us Ms’rs), the drug companies have financial programs for their drugs. Look into it. Good luck…

  • Tripping on Air
    3 years ago
  • tampagal63
    3 years ago

    yes! that’s the most important symptom for me

  • Texasmad
    4 years ago

    I thought I was the only one that developed the left hand shake at the onset of stress! My physician stated it was odd because none of his other patients had shown that type symptom before as if I was making it up but trust me there it is anytime my emotions peak and the more worked up I get the faster it goes. Believe it or not the oddest thing I experience with my MS is during a full blown episode when I sit down to write to me its all flowing smooth and perfect but when you look afterwards I will have written it and all the letters completely backwards in perfect penmanship and I have tried doing this when the episode has passed and its a no go, now if I try typing or sending someone a text I type pure gibberish. I used to have a newspaper column that I had to give up because of this symptom because at one point it seemed like my life was just one big episode. I really enjoy your column, you don’t sugar coat everything and show you can be a positive person without the coating.

  • goofybookworm823
    4 years ago

    I don’t have MS. But I lost my lifelong dearest friend (of 55 years – since we were 12!) to this horrible disease. She died in January – a blessing for her, but oh, so painful for me. Neither of us had siblings, but we imagined that ours was as close to a terrific sister-relationship as anyone could have.
    She was a teacher, and having difficulty holding the chalk to write on the board, being on her feet a lot, balance issues. . .you guys know the drill. And she was a GOOD teacher. She didn’t want to quit. But the MS sapped her strength so badly that she just couldn’t keep going.

    But some of you have been through this: “Gee, you don’t LOOK that bad off. What’s the problem?” We had an advantage. I had spent two decades working for Social Security. I knew how to highlight the difficulties that weren’t always apparent, to point out the things she couldn’t do that other people could – so working together, we were able to get her on disability. I worked as her advocate. She was denied twice, so when we were at the Appellate Level, I pretty much let the judge have it, right between the eyes. Together, she and I had prepared a list of things that she needed to do as a teacher, that she either couldn’t do any more, or could barely do. That, coupled with medical documentation, won the case for us. The judge asked me at one point, “How long have you known Ms. _______?” I told him, “Since we were 12, and my Dad used to take us to the beach together.” Somehow, that detail got him. And the carefully documented decline since that time seemed to fall into place, and he granted her disability. She told me so may times later how grateful she was to have disability, because she had (typically) worked way past the point where she could do the job without horrific exertion.

    So, I felt like I had won the battle, but ultimately, lost the war. You can’t lost a friend like that without losing a part of your own heart along with her.

    If you guys can direct me to a part of your site where friends left behind can vent their grief, that would really help. Not a day goes by without being acutely aware that my dearest friend is no longer here.

  • Coley637
    4 years ago

    Thanks for this Cathy! It is so nice to hear, or read, about others with MS and how they are dealing with it. While therapy is good for me, sometimes places like this are better. I have also found it to be very helpful to write my thoughts and experiences down. I am not sure why I find that helpful, buthey, I will take what I can get. If you are anyone is interested you can read a couple of things I have written about my experiences with MS. It’s a project that I hope will keep me busy while I try to stay out of the heat here in SoCal. http://thoughtsonpolkadots.tumblr.com/

    Have a fabulous day!

  • fifilondon623
    4 years ago

    Thanks so much for sharing your story. It is almost identical to mine. I have different aches and issues, but all in all the same story. I feel so isolated and bad. I mean I actually want to do things, but I just can’t; my body will not physically allow me to keep up with different engagements. I missed my grandmother’s funeral do to being in the hospital. I felt relieved reading your story. I know TODAY for sure, I am not in this alone because of what you shared. Thanks and blessings. I definitely will be enjoying the rest of the week.
    Dee

  • cabotsmom
    3 years ago

    You go Kathy as I think this speaks for all of us. I could not be more isolated and now people don’t even invite me. I try to tell them it isn’t “catching” and I just might feel good enough that day to go but still no offers and now the phone calls are really limited and soon, like my family, they will just go away.

  • cherylrad
    4 years ago

    I totally understand what you are saying. My neighbors all know that I have MS…but do not know that I am on disability. I worked full time for many years with MS while managing a house and raising two children. Finally, my overwhelming fatigue and cognitive difficulties made it impossible to continue working. I grieved the loss of my job.

    I have those pesky “invisible symptoms,” that people don’t understand. I’ve been told that, “Everyone gets tired.” Having to explain that this is a whole new level of “tired,” that makes even thinking and speech too much of an effort and when I say I’m done…I really am done for the day. I can’t tell you how many times I’ve heard the old, “But, you look so good.”

    If I have the energy and I feel the person making the comment is worth my time…that they will listen and at least attempt to understand, then I will explain how no two persons with MS are the same…yada yada yada. I used to be embarrassed to use my placard. But not anymore. It gives me a little more productive time in my day.

    I apologize if I have been rambling…I know y’all get it.

  • fifilondon623
    4 years ago

    I totally agree. I am the type who uses my placard because I like to get things done in hurry, grocery runs etc. I am so unsure of when I will get too tired to continue the shopping. I have left a full grocery cart because of fatigue. I slept in the car in the parking lot of the grocery store because I could not drive to my home. A quick power nap, people don’t understand will make all the difference in my day. It is usually like you suggested; mid-afternoon. Although, I am a very early riser.

  • Pokervibe
    4 years ago

    U know the biggest thing for me right now is that I am in the legal system (going thru a crazy divorce custody battle). I look fine but the fatigue is crazy AND this summer I had the worst exacerbation of my life. And STILL I was told I was faking it. How the hell do I get ppl to believe me? They even had me found guilty of beating up the new gf which I did IVE NEVER EVER been arrested in my life nor beat anyone up. Now I spent 5 days in jail NO witnesses, no evidence, no marks. And the reason why I was found guilty is bc when I was asked a question on how it all started I said I honestly don’t rememwber how it started (the argument we had which was over a year and a half ago) The judge then thought I was lying. So he found me guilty. But what makes it worse is that while I was in jail for those 5 days they denied me my right to any of my medication I had been on for 13 years (a violation of my 8th ammendment rights btw) and in convinced that’s why I had my big flare 2 weeks after I for out of jail. I mean how messed up is that?!? I am honest when o say I didn’t beat her up I didn’t even touch her yes we exchanged words. But that’s it!! If I had someone to UNDERSTAND this memory issue I would have never been convicted. So not fair! Ughh. Talk about depressed. Yep I’m the poster child for sure.

  • fifilondon623
    4 years ago

    I really feel for you. Sound like you handled this entire fiasco the best way you could. I have had a stressful event, nothing like what you experienced; but it will cause an exacerbation. I have learned over the years, arguments are not worth the energy I need to preserve to interact with those I truly love. I have learned to walk away, and this was hard as I am a person who definitely tried in the past to get my point across. I have learned the calmer I have allowed my life to be, the better it has been for me and my MS. I still have my strong WILL so MS has a fight on its hands. Be encouraged!!

  • LAC1120
    4 years ago

    I choose to not think of MS as a disease. More like a condition. If you have a disease, you are sick. I am not sick! Now, does it alter my life? Yes! Do I have my “pity party” days? Yes! Do I watch people doing the simplest things, like walking, and wonder if they even realize how lucky they are! Yes! All of those symptoms that you described, I go through on a daily basis. I have primary progressive MS. It’s a major pain, but it is the hand I was dealt. I have an awesome support group of friends and family. Without them, I do not know what I would do. i still get the “you look good, so you must not have it very bad” comments. Would love to let them have what I go through for just part of one day. They would not say that then!! Oh! Well, hang in there everyone. This roller coaster ride that we live is not fun! But thank goodness for sites like this where we can share stories and realize that we are not alone!

  • Debof3
    4 years ago

    just got home from the hospital after 2 days of same ole thing MRI,ct scan yada,yada,yada and a relapse was the diagnosis. I have had strokes in the past, 08,09. which has left me with left side paralysis but it seem my relapses interfere with rehabilitation.Seems like my ms is a illness of convience to family and friends. I asked my Neuro about this the other day stating that I sometimes don’t mention my symptoms at all because they seem like I am making them up just to get out of leaving the house.I enjoy stuttering, intense fatique, extreme weakness and tingling! Not!! Neurologist is starting me on pill form soon..hope this helps!

  • Kelly McNamara moderator
    4 years ago

    Thanks for the comment and for being a part of our community! So sorry your friends and family are having a difficult time understanding. One of contributors has a good article about just how hard it can be describing invisible symptoms that might be worth reading: http://multiplesclerosis.net/living-with-ms/describing-invisible-symptoms/. Whenever you feel like you need to support or just a place to share how you’re feeling, we’re always here. Wishing you the best. – Kelly, MultipleSclerosis.net Team Member

  • Suzyq
    4 years ago

    Those of you that have support and understanding from your spouse are very blessed. My husband still just looks at me like I am a big faker, even after all these years. I guess in all fairness, he does get me in a hot shower and tries to rub out the spasms when they reduce me to tears. I also have the itching and “crawlies”.
    Does anyone have the problem of their feet “rolling” on them when a weak spell hits? Have you found anything that helps?

  • Billie73
    4 years ago

    Wrote a similar thing as I also get to hear ridiculous remarks. It’s amazing how other people seem to know more about MY MS, and THEY know better than I do. It never seizes to amaze me, but it’s also quite painful having to “justify” your illness. Ignorance is bliss in their eyes.
    http://irelandms.com/2014/09/26/what-you-might-not-be-aware-of/

  • Cathy Chester moderator author
    4 years ago

    Thank you for sharing that, Billie73. You are so right.

  • jackie5275
    4 years ago

    Interesting thing about the itching being mentioned in this article and in the subsequent discussion. I never experienced this, nor have I heard it as a symptom. However, while scratching may seem benign, folks please be careful about needing to “scratch until you bleed”. This for me, with eczema, has caused me to get cellulitis. I just don’t want anyone else getting it due to excessive scratching.

  • Cathy Chester moderator author
    4 years ago

    Yes! It can also happen with other ailments like eczema. Yikes!

  • Dianna lyn
    4 years ago

    Thank you Cathy for your post, very well written.. Yes, I have MS ..but, it doesn’t have me!..My husband is also my witness to this awful disease called MS. I was also approached one day, with a older man about taking up handicapped parking. I forgot to hang up my placard. He had me crying when he was yelling at me. I pulled out, then two miles down the road I had to pullover because of my shaking. We need more MS awareness, and no offense to walk Ms.but, I just can’t walk like a normal person can anymore or ride a bike (my favorite). If I could, I would but, this disease has really taken a toll on me these past couple of years, I just keep hanging in for now. Anyway, may God bless us all that have this terrible disease.

  • fifilondon623
    4 years ago

    I am hanging in there with you. I am in school online obtaining my degree. Going back to college has been a lifesaver, while sitting in the house on hot days. I get to feed my brain, and stay as sharp as I can. I am 42 years old, and I feel like; if I am this way now with the aches and pains, how will I feel at 50 or 60. I get down sometimes, but knowing I am closer to my degree, makes me forget about this MS for awhile. Hang in there

  • Cathy Chester moderator author
    4 years ago

    Isn’t it frustrating sometimes? But it’s also a chance for us to educate others about MS. That’s how I try to look at things. Thanks for sharing your thoughts, Dianne lyn.

  • chalknpens
    4 years ago

    So well written, Cathy, as always. Vision, typing tremors and cognitive fails are my most troubling symptoms. That, and melanoma, and senior citizen-itis have taken their toll or my former-productivity. I, too, use a handicapped placard because if I didn’t I might walk for hours in a hot or icy parking lot looking for my car. I have to renew it this fall, and will, if I remember it!

  • Cathy Chester moderator author
    4 years ago

    You are dealing with so much, chalknpens, and I am thinking of you. I hope you fare well and have days (and then some!) of good health. Thanks for sharing your thoughts. Cathy

  • Mspbfh2
    4 years ago

    Thank you Cathy for writing this. It absolutely speaks to my condition. I too have scratched my skin until it bleeds; occasionally lotion helps. I feel fortunate in many ways that my MS isn’t always visible, but that means I have to prove it affects me. I get so very tired of doing so. I’m not helpless!! Even if I park in handicapped parking (which I usually do since I get so tired) it doesn’t mean I can’t brace myself against the car and load my groceries into it. Why take a bagger away from the doing that to load groceries? I will push myself until I want to cry just so I won’t be accused of faking it. I’m having a pity party right now, and will have a short cry, but then dry my eyes, put my chin up, and get on with what I have to do.

  • Cathy Chester moderator author
    4 years ago

    You are inspirational and I appreciate sharing your personal story here, Mspbfh2.

  • chalknpens
    4 years ago

    Yes, but I’ve learned through the years that it is not so much OTHERS who would accuse me of faking it, as it is my own disbelief that these symptoms could so affect me. It is a struggle to straddle the happily ever after of denial with the need for self-limitations and modifications. Chin up.

  • dianne
    4 years ago

    Thank you everyone for your comments and Cathy for what you have written. I feel like I have to “prove” that I have MS but when I make a comment to express what is happening to my body I am met with being accused of self pity or unbelief. It’s hard. I don’t have that “someone” in my life and I am surrounded by friends and family. So reading this brings me great comfort….I’m not crazy and I’m not feeling sorry for myself! It’s ok to take those breaks during the day and rest, and not feel guilty about it or explain it to anyone. Awesome 🙂

  • Cathy Chester moderator author
    4 years ago

    Yes, go easy on yourself and one day at a time. Having people who love and care about you is everything. You are important, you matter, you are valued. Thank you for sharing your thoughts here. Cathy

  • Laurie
    4 years ago

    Itching was one of the first symptoms I experienced shortly after the birth of my first child. It always happened at night when I got into bed, and I would have to take a cool bath in order to stop it. That was 1976, and MS wasn’t even on my radar at that time, but based on what I’ve learned since then I’m convinced it was an early symptom. I don’t know how common it is though.

  • Cathy Chester moderator author
    4 years ago

    It’s pretty common, Laurie, and I think it’s why so many people need to discuss it. Good idea about taking cool baths!

  • Lori
    4 years ago

    I understand how you feel. I must look too intimidating or something, as only once has someone told me I shouldn’t be in a handicapped spot. I asked them if they wanted the phone number so they could give their opinion to my neurologist and that was the end of it! I do hate it when people (I know they MEAN well) tell me about this or that cure or exercise/diet that will make me feel wonderful. I have never enjoyed being seen as weak or lacking (who DOES??) and those kind of things make me feel hopeless – ‘here we go again’.

  • Cathy Chester moderator author
    4 years ago

    What a great way to end that questioning. Actually, one man who scolded me about handicapped parking was a famous anchorman on CNN! My mom was walking behind him when he spoke to me and if the look on her face could be hurtful….need I say more?

  • joebic01
    4 years ago

    “He knows what it takes for me to get through an ordinary day. I am blessed to have him as my lifetime best friend.”

    Not only does He know, She knows as well. I just lost my wife of 30 years to cancer in a sudden way. Everything you say is completely true yet you still get those who know “everything” about you. My wife knew what was going on and it was a blessing. Personally, I’m getting to the point when someone says something derogatory I correct them and say, Maybe you should live in my shoes for a few hours. MS is ugly and I am not.

  • Cathy Chester moderator author
    4 years ago

    You are never, ever ugly. Exactly right. Let me express my condolences on the passing of your way. I am so very sorry. I hope you continue to be strong in the way I am guessing she’d want you to be. Thank you so much for leaving your personal story here for us.

  • Victoria A. Davenport
    4 years ago

    Is this itching thing common? I have scratched until I bleed also until I read somewhere to put ice bags on the area. That worked. However, the itching of my scalp is terrible and I can hardly put ice bags on that. Any ideas??

  • Cathy Chester moderator author
    4 years ago

    I’d have to look up the statistics and I get the itching on my head as well! Itching is more common than we think, and it would be a good idea for both of us to research ways that are helpful to stop it. I’ve tried ice packs, calamine lotion and aloe. The search continues…

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