You Know You Have CMT When…


I recently posted a CMT 101 type post to tell you all about my disability (disease, disorder, whatever you want to call it) called “What is CMT.”  I wrote that post primarily because I wanted to write this one, but I felt you guys deserved an explanation of CMT first.

I am the member of several CMT groups online, and one day someone posted simply saying “You know you have CMT when…” and waited for the comments.  Reading the thread of that post brought me so much joy. It was so refreshing for me to read things that are common in my life (and my family) happening to other people.

Now, before you think that’s mean of me to say, remember this: People with CMT live with it every single day.  We learn how to live with what it does to our bodies, and many of us have accepted this as reality.  So many people on the thread commented about how great it is to know there are others like them.  If you know these everyday “mishaps” won’t change, isn’t it nice to know that you aren’t alone?

I asked the group if I could share this thread with my readers. I feel like this is a great way to give you all a glimpse into our everyday living.  For us, this post was hilarious, because it’s all statements we know to be true and have to live with every day.  For those reading who don’t have CMT, just take a second and imagine how your life would be different if this was your reality.  Seriously, imagine it as you read.

I’m not saying this to gain anyone’s sympathy. I just want you all to be more educated and aware of CMT and what it is.

Here’s how this works.  Each bullet point signifies a new comment, so some of them piggy back off of the one before.  These were taken (pretty much word for word) from the thread in my group. I’m not going to link the group or use a single name for the sake of anonymity, but know that there were hundreds of comments and a ton of people participating.  I don’t have the whole thread here, but I picked out some of the ones that I thought best showed our situations.

To my CMT friends in my group: thank you for letting me post this, and of course, for making us all smile and feel less alone.

Occasionally, I will comment on the bullet points. This was not on the thread, it’s just for you guys. My commentary will be in purple.

Click here to read “What is CMT” for a better understanding of the disease

Ok, readers.  Welcome to the life of a person with CMT.

You know you have CMT when…

  • You buy shampoo & conditioner based size & shape of the bottle, that is it’s grip-ability, squeeze-ability and ease of opening.
  • You buzz cut your hair so you don’t have to deal with it anymore because it’s too painful to wash/condition/cut/color/dry/style/etc anymore.
  • You give stairs the stink eye.
  • It takes you 15 mins to button one button on your top (Putting hubby’s dress shirts away are a huge pain too)
  • You look for aluminum cans with the pull tab because you can’t turn the can opener
  • You can’t wear high heels
  • You know what it’s like to always be the caboose when you’re in a group of people walking (story of my life)
  • It takes you three times longer to do anything normal people do
  • Your toes don’t even touch the floor or work…they’re just decoration.
  • You look fairly normal but can’t get up a curb or off the floor without holding on to something
  • You fall over when standing still
  • When you try to hang out washing on a line – oh dear lol (learned that one in Japan…NOT easy)
  • You can twist your ankle getting up from the toilet
  • You fall down and can’t get back up
  • You can’t walk on grass
  • or a beach or any ground slightly uneven
  • or on rocks/gravel
  • or on flat ground
  • You open almost everything with your teeth (110% me, always!)
  • Tying shoe laces is a ten minute operation
  • Texting is one finger only – your best finger!
  • You have to buy new dishes once a week
  • you fist bump rather than shake hands
  • Wearing earings with butterfly backings are a thing of the past
  • When the aide on the school bus has to finish dressing your daughter because Mommy’s hands don’t work today.
  • Your cat jumps out of the way when you step near by
  • Your 7 year old paints your nails and your 3 year old buttons your shirt for you.
  • when you can no longer sneak up on people
  • Putting a key in a door needs serious concentration (I can put the key in, but turning it is usually a challenge)
  • when your superfan son wants to be an extra on The Walking Dead because his natural walk is so zombie
  • You walk extra steps to find the shorter part of the curb, even if it’s only a few millimeters shorter.
  • You smile sweetly at the parents of young children mimicking the way you walk
  • You love animals because they don’t judge you
  • You would fail a sobriety test without drinking a drop of alcohol (I’ve joked about this for years. Luckily, this has not been tested)
  • muscle twitching keeps you awake and/or you wake up with charlie horses
  • When falling down becomes a hobby.
  • You are amazed when you see someone fly down stairs without holding on to the rails.
  • When falling up the stairs becomes a hobby
  • when it stuns you everytime you realize you can’t do something anymore (run, hop, button, skateboard, wear heels)
  • When your hubster and kids are really not surprised when you fall over and they stop asking where the massive bruising on your legs just randomly appear from just the slightest knock
  • You tell someone you have cmt and people ask what’s wrong with your teeth
  • When you try to jump rope and quickly realize that ship has sailed.
  • Picking up a pint glass requires two hands. (always)
  • When you hate getting out of bed since you know standing will bring on more pain.
  • When you tell someone the name of our disease and they think we have a mouth full of bad teeth or when they give you a look like you just told them your an alien or something.
  • When you go out for sushi and you have to ask for a fork because you can’t use chopsticks
  • You stand outside while the rest of your family goes into a store full of breakables.
  • Snow is your worst enemy. (There is a legit reason I hate the stuff, friends)
  • You spend half of your lunch just trying to open the stupid little packets the condiments come in (Yes!)
  • Pulling out your debit or credit card out of your wallet with your teeth because it’s too tight to pull out with your fingers
  • Feeling stupid because you have to grab your drinks with both hands when you’re at the drive thru window (It’s why I hate the drive-thru)
  • Dropping your change when the cashier gives it back to you
  • When you use a shopping cart as a walker while shopping
  • You have furniture strategically placed in your bedroom, so you can get to & from the bathroom relatively safely at night without turning the light on.
  • …or even with the light ON, for that matter!
  • You can’t open a damn thing.
  • You can turn your ankle just by stepping on a lost sock on the floor.
  • Cold feet 24-7
  • your new doctor knocks your elbows and knees 10 times during reflex checks just to be sure he’s not hallucinating (CMT patients tend to have no reflexes to speak of)
  • when 40mph winds have the ability to knock you over
  • When you have 3 fractured bones in your foot and don’t even know it (I once walked on a broken ankle for a month)
  • You have to look down all the time to see where you’re feet are going. The eyes send the message to the brain not the feet. Screw walking tours…you see nothing.
  • When you drop something onto the floor, sometimes you just have to leave it until you feel you can retrieve it without falling over.
  • If you fall down you will crawl to the nearest sturdy item about 20 to 30 inches high to pull yourself up with. Getting up looks (and feels) like fancy yoga move that only you understand.
  • The only difference between your “dress shoes” & casual shoes is their age & state of cleanliness
  • You dread hearing any medical person say, “Interesting!” because it is invariably followed up with a whole lot more docs being invited in to check you out! (Every one of my visits to the MDA clinic ever)
  • When the child proof bootles become adult proof…
  • When your husband won’t let you hold his cell phone. (This happened when Mister got his iPhone 6.  He passed it to me like it was a newborn child)
  •  When you see a spot on the counter, scrub it has hard as you can and nothing happens
  • When your not sure what’s harder: wrapping presents or unwrapping presents!
  • When you would starve to death if you didn’t have scissors. (or in my case, a really sharp knife)
  • When you get out of the shower with a bright red tan (I always wondered why my legs were bright red and blotchy)
  • Your hands move less the colder it gets
  • The pedal to open a trash can is stronger then the front of your foot. Useless pedal.
  • When you go to stand up from the couch and fall backwards back in it… 5 times
  • While watching Game Of Thrones you think no way I could get around in that world.
  • I would need a Hodor!
  • It takes ALL of your grip strength to pull the thin paper wrapper off a drinking straw!

That’s just a little bit of insight into it, friends.  I hope this helped open your eyes just a little bit more into the everyday struggles of life with CMT.  Thoughts, comments, questions?  Feel free to start a discussion in the comments below.


77 thoughts on “You Know You Have CMT When…

    • Char Marquart says:

      I laughed so hard over some of these. Lol My daughter read them and was like… Yeap, that’s you Mom!! Lol I felt the bite in 2007…

  1. Dave Hare says:

    Glad you posted this many of these happen to me, I am new to CMT and glad to know its not just me! also you can’t help but laugh,Thanks

  2. Lori Harms says:

    This is hilarious! I couldn’t help but laugh. My cats trip me all the time… and I trip on nothing all the time. Interesting about the red blotchy legs because I’m a ginger and it makes the redness very obvious.

    • divaandthedivine says:

      I get tripped by my parent’s dogs all the time. Hubby and I are getting a Yorkie and he’s like “You are REALLY going to have to watch yourself around her” lol

  3. Helen Heal says:

    I can relate to most of this. must show it to my family so they understand me better. Very well written. Thank you.

  4. Devra Wiles Butts says:

    Omgosh! This is hilarious, unfortunately, because it’s all so true. These are things I go through almost daily. Thank you so much for the laugh. It’s so good to know we are not alone in this struggle. 🙂

  5. kelly bruner clemo says:

    EVERYTHING you had on your list is ME! Here’s another one: When you have to hold your new grandson sitting down. You have to pull yourself up stairs and hang on for dear life going down. It’s too hard to get out of the tub, but not enough balance to take a shower. I had no idea so many others have CMT! Thank you Tony!!

    • divaandthedivine says:

      I agree with them all. I feel like I have to be so careful with babies. Since I’m at the age where all my friends are having kids, I’m going to have to figure that one out. 🙂 Thanks for reading and for your comment!

  6. beckye5 says:

    Very insightful! Some of these I knew from having you join our family, but some I did not. This is a great article for those WITH CMT to realize they are NOT alone, and for families and friends of people with CMT to help understand them a bit better.

    • divaandthedivine says:

      I’m sure there are plenty of other things you will learn about me and how my body works by having me stay with you in June. It’s a learning experience. Your son is learning that too:-) I’m grateful that I have such understanding and accommodating in-laws.

  7. Slyvia Kukucka says:

    I to have CMT., found this out 25 years ago. My sons doc. said he had it, and the doc. askes to see the rest of the family. He said there is a 50% chance that we to may haveit. We were all tested. I carry the gene and all five of my kids have CMT. The doc. said I should play the lottery as we are 100% with CMT. My husband dose not have CMT. And its good to hear that others have th same problems, and I swear I have all most everyone of them..

    • divaandthedivine says:

      It will be interesting to see how CMT manifests in each of your children. Even in my family, my dad, grandfather, and youngest sister (the middle sister lucked out and didn’t get it), all have it with me and each of our bodies are completely different.

      • Slyvia Kukucka says:

        So far my granddaughter has CMT she is the daugher of my son. She has 2 young kids my greatgread kids and too soon to know if they have it..I have 5 more grand kids, and none have CMT.

  8. faithful says:

    How about; your husband leaves you for another…younger, healthier woman that has money. And one of his narcissistic “excuses” is that it’s just too hard to watch you be in pain. And besides, the younger woman has money and they can be active and travel. After over 30 years of marriage….

    • divaandthedivine says:

      I’m sorry that happened to you. 🙁 his excuse is a cop- out, that’s for sure. I can’t imagine what that feels like. So sorry

  9. Angie says:

    Oh my, pretty much every one of these applies to me! I always use my teeth even though I know I shouldn’t! I’m glad I’m not the only one! And I hate always being the caboose!

    • divaandthedivine says:

      I use my teeth for everything! My husband thinks it’s ridiculous, but you do what you can to get the job done, right?

  10. Aurelia Shaw says:

    These were such amusing comments. I can relate to so many of them. i am an 82 yr old retired teacher who after one of my falls had the pleasure of having my leg cast signed at the same time one of our football players had a cast. I was later diagnosed with CMT. I’ve had It now for probably 30 years. I exercise every day and am so fortunate to have a wonderfully supportive family.

    • divaandthedivine says:

      Exercising is so important to keeping the function that we still have going strong. Kept up the amazing work and the positive attitude 🙂

    • dearmsjulie says:

      What type of exercises do you do?
      I’m trying the balance Wii game. I have to have hubby stand behind me though to catch me when I bend too far.
      I would like to do some real exercises though.

      • divaandthedivine says:

        I walk, do the elliptical ( I like a specific machine at the gym that has a comfortable stride) and life weights with the aid of weight machines.

    • Holly McDonald says:

      Another bullet point: when you turn your ankle and your first instinct is to drop to the ground so you don’t break it!

  11. Cecilia Dobrovich says:

    Yes, that’s me! I can SO relate to the getting up off the couch only to find myself sitting again. All you can do is laugh. Just taking it day by day. My hubby is fantastic. He says we will deal with it the best we can. I am so grateful.

    • divaandthedivine says:

      You’re a lucky woman to have a great hubby like that. Mine is the same way, which makes me feel confident in the future for sure. Keep laughing 🙂

  12. Evelyn says:

    I have one for you… trying to walk up the alter steps with nothing to hold on to
    to receive holy communion

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  14. Frank says:

    Even me, a Belgium citizen with CMT have to say … yes … i had it all, all symptoms read here above …
    so funny that we are so special people, we are unique because the health people doesn’t have such fun as us with dropping dishes, glasses, and falling all over again, but .. I feel happy and … I had already several relations but the women don’t care about my CMT because i try to do most things myself and i am an optimistic person 🙂
    so … Always look of the bright side of life lala, lalalalalala 🙂 have a nice day CMT’ers 🙂

  15. Leona Pence says:

    I got a big laugh from your post. As a lady of 72, I’ve been there and done most. I try to stay positive in spite of it. I typed a novel using the eraser end of a pencil(many pencils)and had it published by MuseItUp publishing in Oct. 2013 at the ripe old age of seventy. Now, I use an ipad stylus to type with. I stay active, mentally anyway, as a classroom mentor in F2K (Fiction for 2000) and as a member of Writer’s Village University.

    I’ve been using a wheelchair for over 25 years and I’m deaf. I had a wonderful husband for forty-four years unti his death from lung cancer. One of our four children inherited CMT. One of his two has it. We are fortunate God gave us good mates and a good sense of humor.

    Sorry, I didn’t mean to ramble. Thank you for your post. It brightened my day.

  16. dearmsjulie says:

    The shopping cart one made me laugh – I do that too.
    -When you have to quit being a member of the clubs (for me- friends of the library, women in the church (because you are too tired after attending morning sunday school and service), women of (the town where I live, etc) because you don’t know how you are going to feel day-to-day and cannot make the commitment.
    -When you realize that you will never be able to visit the places you hoped to see when you were retired because even with braces you can’t walk there (eg national parks, caves, other countries where you would want to hike, etc)

    I can definitely relate the post about not being able to walk on grass. I will walk far to avoid it.

    Thank you for your blog. I’m glad I found you.

    • divaandthedivine says:

      I’m glad you found my blog too. Those are excellent additions to the post. Remember to keep positive. You’re not alone.

  17. Alice says:

    Unexplained bruising on my lower legs is the norm for me! And explained bruising…like the dishwasher door crashing down on them…soooo painful!!!

    • Aurelia Shaw says:

      It is amazing how just trying to put my shoes on I can bump my other leg and bruise. Now my husband helps me each morning. Reminds me of getting my children ready for school.

  18. Alice says:

    Today I was getting excited about talk of going to see a band I liked when I was 16 (now 35) and facing up to reality that there is just no way I could now stand for that time, let alone 15 minutes.

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  20. Diane says:

    I laughed out load at many of the posts because they’re true for me, too. I was diagnosed with CMT 30 years ago at age 29. I’ve worn AFO’s for 10 years and generally feel pretty fortunate that I’m as mobile as I am.. When my first neurologist diagnosed me he said: “I’ve got good news and bad news. The bad news is you have a disease called CMT. The good news is it’s the least worst disease I treat.” I wonder about that!

    • divaandthedivine says:

      This disease is definitely a “good news/bad news” type. We could be worse off for sure. I’m glad my post made you laugh. Laughter is indeed the best medicine. 🙂 Thanks for reading.

  21. Colleen says:

    Way too funny, so true. The couch thing falling back all the time. My hubby thinks its funny he’ll take his finger and push me back. Sometimes I’m laughing so hard I’ll smack him to stop. Its funny to see my gson 8yrsold ask about my hands he will walk around like a monster. Love hus little heart.

  22. Patricia Castro says:

    Ohhhh these are TOO funny and SO spot on 😛 Thanks so much for the chuckles!!! I thought I was the only one looking for that “special spot” on a curb LOL

  23. Wayne says:

    I loved the one I’ve pasted below because I’ve been hit with it later in life and work in a factory, the company doctors really want my feet to “work” and needless to say they no longer do. PASTED–your new doctor knocks your elbows and knees 10 times during reflex checks just to be sure he’s not hallucinating (CMT patients tend to have no reflexes to speak of)

    • Dwayne H Isom says:

      One of the blessing from CMT.. This was an real eye opener. Never really paid no mind to the one special finger for texting.. lol..

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  25. Anita Wessel says:

    You develop empathy for people who struggle with many different sorts of ‘other abilities.’ Knowing how life deals differing conditions and/ or situations to everyone. For instance I can easily envy an athletic, coordinated, strong person, but they in turn are wishing they had my ability to write and to easily study. Give what you have to share, ask for what you need to survive. And know that being vulnerable creates strength.

    • Jennifer Lopez says:

      Paul wrote something like that in one of his books in the bible. Lol. Not sure which one… Memorization is not my strong point. Lol. Its definitely why God made us each with unique talents. So we could help each other. 🙂

  26. Natalie says:

    I can relate to everything on that list except i have reflexes. Doctors are trying to find whats wrong. I told my pcp cmt, bc my first doc thought it. They still saying fibro. I just want to cry. But I did laugh bc i have all that too!

  27. Ginnie says:

    I can relate to so many of these too. Walking farther to avoid a high curb, using a cart as a walker, and so many more. Thanks for making me feel not so alone. I am lucky to have a wonderful, understanding partner.

  28. Shelly Taylor says:

    Yes I laugh so hard! Everyone of them is so true! I’m at the stage that I have to either get pull up and pull on clothes no button snap zip tie etc. I haven’t been able to work in about 15 years when my boss said don’t come back until you’re well and my neurologist said you never will. I was only in my 40s. Thank you so much for posting this. I do a lot of praying and give God the glory and honor every time I can do something. Even the little things others can do w/o any struggle I didn’t think I could do such as getting out of bed or texting to someone. God has made us all unique and we have a purpose here on this earth which at sometimes it’s very difficult for us to understand why we are going through this . If I can brighten up someone’s day with the phone call or a smile I know I made it difference here on this earth even though it was very difficult for me! As you know even leaving the house is very difficult! God gives us our strength to get through our every day struggles!

  29. Jim Brown says:

    Left off the list is the incredible ability to trip on your own shadow! Wondering where all the blood is coming from, and finally finding the leak! The magic of the multiplying pencil – you drop one and end up picking up 12! And so much more! I really liked reading the list, and I enjoyed your “what is CMT”video. I especially liked your testimony to God’s goodness and your understanding that your body’s story will be, or has been, used for God’s glory. Amen!

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