Not being taken seriously - grrr

General General CMT Discussion
1

Happy Friday!

I was just talking to a coworker and mentioned how sore my legs are from just walking across the parking lot. I have told this particular person before that I have CMT and that is why I can't walk very far without pain. He says to me.."Well at least you don't have Crohn's disease and don't have to get cut open and have parts of you removed!" He's right, I am fortunate I don't have Crohn's disease. I usually just don't say anything to anyone because of this. I feel because I look normal on the outside that people think I am making this up and that I am just being lazy. I tend to avoid going places like fairs, malls, etc...where there would be a lot of walking involved because of this. I don't want to have to explain and really nobody has ever even heard of CMT. Most doctors I tell I have CMT have no clue what it even is. I am just feeling kind of frustrated and wondered if anyone else has dealt with this.

Teresa

2

Teresa,

I totally agree with everything you say. I try to avoid fairs, festivals & malls etc. I made a big mistake of going on a 1 week bus tour around Colorado to take in all the historic train rides. Of course they tell you there isn't going to be a lot of walking, but there was all I could handle.The worst part was that we were on the go from 7:00 a.m. to 7:00 p.m. on the tour schedule. With CMT I truly need my down time, I really got tired of having to explain my discomfort to the other 22 travelers.

No more structured tours of more than 1 or 2 days will be in my future. I share your frustration with doctors. It seems when you do tell someone of your condition you have to do more explaining because no one has ever heard of CMT/

So I share all your frustrations, Hang in there & all the best,

Ken

3

Uggh! I think we've all dealt with this at one time or another. One-up-manship is a nasty game and is never a nice thing to do to people. Yes a Crohn's resection would suck, I have no doubt, but the overwhelming exhaustion from fatigue and terrible pain of overused muscles, coupled with the progressive nature of CMT and the grieving process of losing further functionality year after year sucks too. It's a stupid thing to compare and contrast illnesses. Well, at least he doesn't have "insert terribly nasty disease here!" You can go on all day with that line of reasoning. People often do this (even loved ones sometimes) to try to make us feel better but it does just the opposite. The real problem is, people don't know what to say. His response should have been something along the lines of "I'm sorry to hear that. Do you need to take a rest a bit before starting off again?"

CMT is a "hidden disease" in a way. No one sees the struggle and many people with CMT work very hard to appear normal. I always tell two stories that happened to me.

1) A group of runners used to ask me to come running with them during lunch hour at work. I look very fit and athletic. I never told them why I wouldn't go but I haven't been able to run since I was 8 years old!

2) A guy at work saw me struggle to open a bottle of water (pinching and twisting is hard for my weak hands) and asked me if I was having trouble with that bottle. I chuckled and said I almost spilled water on myself (misdirection) and he responded "Oh. I was going to say, you need to get to a gym!" Ouch. That hurt. He had no idea. No one does.

But... I do get my jabs in sometimes. I saw a colleague struggle to grasp something while he had a pair of gloves on. This guy knew I have CMT and I said to him "Aha! See, that's what it feels like to have my hands - without gloves - all the time!" He looked a little embarrassed and I think he empathizes a little bit more now.

Don't get me started on Doctors! So many of them have such limited knowledge of CMT! They still think it just gives you skinny ankles (that's what they learned in the one day at med school when they were introduced to rare inherited diseases). Current research (and many, many patient anecdotes) shows CMT affects much more than simply the muscles in your hands and feet. My mom actually just got surgery for occipital neuralgia. She had terrible (throwing up) headaches because her occipital nerve was enlarged by CMT and inflamed because her diaphragm is weakened and she was using her shoulders to try to breathe enough. The surgery, nightly oxygen condenser, and physical therapy helped a lot but of course no one would know about any of that! It took her flying out to Stanford from Arizona (on her own nickel) to finally get a real diagnosis. All her Doctors kept saying she had COPD - which she doesn't and they wouldn't even look at the myriad medical articles I provided about the possibility of CMT affecting the phrenic nerve! Now this is a fairly well known problem but it's still rare in CMT patients.

Anyway, I don't mean to scare you. CMT is significantly variable in its progression and some people have hardly any problems while others have major issues. Don't worry as that always makes everything worse! Do know however, that no one else will understand your CMT like you do and don't expect them to. Expect that they will minimize your suffering and may even disbelieve you totally because that's what people do. You are your own best advocate and when some one says "Well at least you don't have Crohn's disease and don't have to get cut open and have parts of you removed!" you can say. Yeah. But I do have CMT and have trouble making it across the parking lot. Then let all the emotion go. You don't need anyone's pity and if they don't give you understanding, forget them.

4

Hi Chad, I just joined this & I'm actually not sure why------cmt is something i've lived w/ for 30 years. I was diagnosed at 15 & it was severe, but I compensated, denied, succeeded somewhat in spite of it or maybe in part because of it. Anyway nobody has responded to anything I've posted on this thing & it's sort of depressing! Perhaps it's because I have always tried to stay positive & maybe be in denial about the cmt---. which doesn't really inspire one to respond i suppose...... i was diagnosed w/stage 3 breast cancer almost 2 years ago. they think they cured it, but the chemo really aggravated the cmt. i had to use a scooter while getting the chemo cuz neuropothy was a side effect and obviously i was vulnerale because of the cmt. Now i get by wearing my braces and using a cane. i hate it. i became an artist in spite of my neurologist's warnings that it was a poor career choice because i would lose my fine motor skills eventually.. i'm an art prof. w/ 5 kids and am a recognized artist. my hands are getting weaker and weaker. (sorry for typos my youngest is sleeping on my arm, so difficult to write.) Anyway i have to admit i am really struggling & really don't know what i'm looking for. here... i guess i should probably join a cancer support group, but i can't deal w/ a bunch of dying people! So in my desperation-- after 30 years i'm finally ready to acknowledge that i have a health problem that totally sucks-- but isn't as bad as cancer. i'm really struggling. i can't believe i'm going online searching for support, but here i am. and u caught my eye, perhaps because of the Rodin reference. anyway i'd love some encouragement or support if you have any to spare.

5

Lilly, it's nice to know there are other people who understand your trials and tribulations and that's always a good reason to join a group. CMT is inherited so, when we have it, we've had it since birth. Many people don't show any symptoms until later in life though. A neurologist who specializes in CMT once told me that, anecdotally, he finds the earlier the onset, the worse the condition later in life. I showed symptoms shortly after birth. I talk about it a bit in my (rarely updated and long overdue for some new content) blog about CMT. Why did I start a blog about CMT when I've lived with it for 43 years? IDK! Maybe the same reason you joined this group. ;-) Do you know what CMT subtype you have? Some progress differently and have very different symptoms. CMT1A is the most common though and the variability of symptoms and progression (even within the same family) is something that Dr.s still don't understand well (although they think environmental differences my account for some of the variability. For instance, I am much worse than my Mom was at my age. Her dad, my grandfather, didn't have too much hand and feet problems but had severe scoliosis in his later life. Do you know which side you inherited it from?

Don't be depressed about no one answering. This place is often a little slow. It's a small group of people and there isn't a lot of traffic usually. Many seem to come here for answers more than anything. I've been researching CMT as an occasional hobby for the past ten or twelve years so I often have some input. I like to write (and talk) a lot but my hands don't let me type so much these days so I only post if I really have something to add. I think some other people have more questions than answers so you don't see a ton of posts here. That's my theory anyway! It's a nice group of people and many here (CM) are very astute!

I'm sorry to hear about the cancer but happy to hear you kicked it!! There are a number of chemo drugs that exacerbate CMT and I hope you didn't get one of those! I can't imagine the fear I'd feel if I had cancer and I certainly would not want to hang out in forums with a lot of people who are dying from it either! I'm usually depressed enough about things on my own. Every time I've gotten over a new loss of functionality, there's something else I can't do (or do so well) and I go through the grieving process yet again. You'd think I'd get used to it (and over it) by now, but I haven't. I have a lot of issues with being a physically weak man in a society where men are expected to be physically strong. I'm mentally very strong though, so I compensate (and deny) and succeed in spite of physical shortcomings.

I don't know what I have to offer as far as encouragement or support other than the sentiment that I know what you're going through CMT-wise (I'm doing the AFO and cane thing too and have recently lost ability to do my job - but also got denied disability insurance - bah!). Also, I love artists (and nurses - but that's another topic ;-)! What I'd really like to know is what kind of art you do and where can I see some of it...? I'm more inclined to care about what people can do rather than what they can't...

Lilly said:

Hi Chad, I just joined this & I'm actually not sure why------cmt is something i've lived w/ for 30 years. I was diagnosed at 15 & it was severe, but I compensated, denied, succeeded somewhat in spite of it or maybe in part because of it. Anyway nobody has responded to anything I've posted on this thing & it's sort of depressing! Perhaps it's because I have always tried to stay positive & maybe be in denial about the cmt---. which doesn't really inspire one to respond i suppose...... i was diagnosed w/stage 3 breast cancer almost 2 years ago. they think they cured it, but the chemo really aggravated the cmt. i had to use a scooter while getting the chemo cuz neuropothy was a side effect and obviously i was vulnerale because of the cmt. Now i get by wearing my braces and using a cane. i hate it. i became an artist in spite of my neurologist's warnings that it was a poor career choice because i would lose my fine motor skills eventually.. i'm an art prof. w/ 5 kids and am a recognized artist. my hands are getting weaker and weaker. (sorry for typos my youngest is sleeping on my arm, so difficult to write.) Anyway i have to admit i am really struggling & really don't know what i'm looking for. here... i guess i should probably join a cancer support group, but i can't deal w/ a bunch of dying people! So in my desperation-- after 30 years i'm finally ready to acknowledge that i have a health problem that totally sucks-- but isn't as bad as cancer. i'm really struggling. i can't believe i'm going online searching for support, but here i am. and u caught my eye, perhaps because of the Rodin reference. anyway i'd love some encouragement or support if you have any to spare.

6

Chad, thanks for responding. I'm pretty sure I have CMT 1, but it is a bit of a mystery. Back in 1985 I was diagnosed by a very respected neurologist. The eltro-neurological tests revealed CMT, but nobody else in my family had it. The Dr. tested my parents & sister & all were normal. My paternal Aunt said she was experiencing weakness in arms & legs , so she went for tests to see if it might be CMT. ---She was diagnosed w/MS as a result! They started her on an "experimental drug" at the time, & she is still doing great at age 80 today. Anyway then their only choice was to do a nerve /muscle biopsy to confirm my diagnosis, which they did & CMT was confirmed. Apparently sometimes each parent carries a recessive gene, or sometimes a mistake at conception occurs & SHAZAAM a brand new CMT case! I've since seen other neurologists-- all suspicious after hearing "no family history", but after examining me willing to concede that if nothing else I do at least have a "CMT-like disease". I remember the neurologist that did the biopsy saying that the myelin sheath around the nerve was deteriorating--- Type 1 correct? What does run in my family are autoimmune diseases on my Dad's side--- he had Type 1 Diabetes & Thyroid disease, his mom had rheumatoid arthritis, his sister was the one diagnosed w/ MS & one of my daughters has Type 1 Diabetes. I was seemingly normal until I was about 12 & then I started to have a real hard time walking.... I assumed since CMT is autoimmune I must have developed antibodies at that age & that set everything into motion.

Anyway I checked out your blog--- I hope you are adjusting well to parenthood......! certainly can be a shock to the system! As far as the CMT affecting your ability to work how can that be? Isn't CMT a protected Disability? Doesn't your employer have to provide u w/ what u need to perform your job? The University I work for has quite a few employees w/physical issues & they have computers they can speak into rather than type at etc.I would love to send you some images of my art, where can I send them? I am a very private person & I don't feel comfortable posting them here. I prefer to remain anonymous (although I realize probably nobody here but me really cares!). I also could give you my name & you could google me. Thanks again for responding. What type of work do you do? Hope to hear from you soon.

7

Lilly,

So as not to hijack this thread much longer, I sent you a friend invite. Accept I can send you messages...

8

Teresa,

Sorry for the delay in response. we've had lots going on lately. Had my youngest daughter's wedding Sept. 12 and planning that and wedding showers and now a great grandchild due in Dec. In addition to my regular babysitting my 3 yr old granddaughter daily 10 and 1 1hrs a day. Can go on . . as seems when you don't work a "regular" job everyone thinks you have time to do everything else so hubby and I take on a lot!

One of our members, Chad, put it so well! With CMT, most cannot see the struggles we go through, for even the simplest tasks,, because we wear it so well! I've experienced many times people trying to sympathize, rather than empathize!

I personally do not want sympathy but empathy! Empathy is the ability and desire to "understand". Most do not so the defect we've struggled with our whole life, and constantly struggling to adapt as it progresses. But, unless we are in a wheelchair or totally dependant on others to feed, dress, bath and provide mobility, we are considered normal. I'm told so often, "but you look So good". They do not see the pain and fatigued I feel! Only my closest friends and family see that I do not feel well, but keep trying to go on b/c people expect it.

I think this is one of the hardest things, for even our family to see ,we are damaged, and do not function even though our outside package doesn't seem so bad. But, everything is affected by the electrical system (nerves), but unless an electric wire or cord's coating is broken or cracked, they don't think why its not functioning or it glitches b//c inside the coating the tiny little wires broken on inside of the plastic coating.

We have to grow comfortable with ourselves, and do the best we can for the given day. Everyday is a new set of challenges but with encouragement and support, even from total strangers (in our group), we share a common ground to relate! This is why the group, and sharing and discussions can be vital in maintaining this disease and its challenges.

We do understand and with the support we can empower one another to stay strong!

CM

9

Sometimes if you do not get immediate response to a post, it may be b/c you did not start a new discussion! If you want others to notice the post its best to begin a new discussion rather than reply to one already in the thread.

10

I haven't been officially diagnosed with CMT, but there IS something wrong with my muscles and my way of walking. I feel tired and pain in my legs after walking long distances too (aaand, unfortunately, I'm a Cart Attendant for my local Target company, which involves lots of walking,standing, heavy lifting, pushing, and pulling), and when I complain of these things, EVERYONE brushes me off. I've spoken with a few famous CMT Patients, one dubbed Misa on Wheels by the cosplay community in northeastern America, and another woman who is dubbed The Face of CMT, Bernadette. Both were very supportive of me and wanted to help, and both encouraged trying to convince my mom that something is wrong (P.S. I'm 17 years old and live in New Hampshire, so I can't take myself to get tested yet), and if not, then I'll have to wait until I'm 18.But currently, she blames my pain and walking habits on my periods, my mental state (I have depression, O.C.D., Bipolar Disorder, and some kind of Personality Disorder... not sure what though), my lack of exercise, and when I DO exercise, she complains that it's from exercising too much(when all I do is approximately 30 minutes of exercise), and not wearing my orthotics. It's almost like she completely wants to avoid the topic of my muscles not functioning as well as I'd like them to... I'm still trying to come up with a way people in our situations can talk to outsiders....

11

I understand completely what you're going through Teresa. I'm currently in the military and was just diagnosed with CMT. I'm on limited duty because of it. So, I'm not doing much when it comes to work. Everyone keeps saying "lucky you!" Not really shipmates. If you were going though what I am, you wouldn't like it either.

Dan

12

Hi Tess. I just came across your post today. I get this all of the time and as a matter of fact I had this discussion with my husband last night. I certainly feel your pain and frustration of having an "invisible" disease. I even got into a heated argument with a friend a while back because she feels strongly that since we can walk we shouldn't have access to things such as parking or restrooms designated as "handicapped". She stated since her husband is a paraplegic then his need is greater and "people like us" (her words) are taking away from the "truly handicapped" (again - her words). I told her that just because I haven't given in to my disease yet doesn't mean that his need is any greater than mine and that she should refrain from talking about a subject that she doesn't understand because she has no clue about CMT or how it affects the body. I could have said so much more but I could tell that she already had her mind set and that I was just wasting my breath. Sometimes I think it would be easier to be in a chair and then people would be a little more understanding.

13

Friends;

So true about having an "invisible disease". We struggle enough with ourselves about it and really need understanding. We have a journey of learning to manage our symptoms and limits but also a journey of acceptance vs. denial. Many around us do not understand that just because we can walk doesn't mean always should.

Using tools such as wheelchairs, braces, roll-ators and adapting devices, keeps us able longer or gives us ability vs disability. Just using a wheelchair doesn't make us crippled or lazy it is using our tools available to keep us able to live a better quality of life. We continue to find ways to continue to do things rather than just give up on life.

Using a wheelchair or a rider in the stores helps me not be in one permanently.Using leg braces helps me to stay mobile rather than dependent.If we can use a power saw rather than hand saw to get the job done more efficiently and last longer to finish the job then isn't that using your brain to choose the power saw or is it giving in and being lazy?

We have to become confident in knowing how to manage our disease and don't allow others to intimidate our methods. This is our "house and dwelling" and we know what it needs to maintain it best! Let them know kindly, to take care of their own house and quit telling you how to maintain yours!

Awareness is a key to empower us and others to become educated about CMT and other invisible diseases.Because we appear normal doesn't mean we are normal.

A cord we plug in conducts electricity but if it gets a small nic or cut in it (many times not visible) damaging the conductivity it affects the performance and even shorts out at times causing more damage. We have lots of those cuts and nics in our electrical system (nerves) that definitely affects how we are able to perform!

We are here to help, support , encourage and educate!

CM (Can Manage) CMT (Can Manage This)

14

I feel your frustration, I’m so glad I have a very supportive wife and understanding friends. I can’t imagine going through the onset of these diverse symptoms and being made to feel like we are milking it or making it look worse than it is. I grrrr quite often, but it’s more against this stupid disease than at others.