My name is Zander and I am a 20 year old college student at Columbia University in the USA. I was diagnosed when I was 10 after recurring muscle stiffness and difficulty in playing sports and climbing stairs. My experience, according to my doctor, is pretty comparable in the relative level of severity as most people who are diagnosed with MC. I recently broke my finger and had to have surgery after "freezing up" when tripping on the sidewalk.

Something that I have grappled with for some time is 1) am I disabled and if so 2) given the complexities of MC should I convey to others that I identify as a disabled person. As I am sure others experience as well, my stiffness and difficulty with my condition are at odds with my physical appearance, namely that of a relatively strong young man.

For most of my life I have approached those questions with indifference. Why does it really matter how I define myself? Isn't the notion of "disabled" just an issue of semantics I thought? If I can explain my experience to those close to me and they understand what does it matter what terminology others use to define me?

Recently, I have meandered along opportunities for internships reserved for "diversity" programs-- in effect inviting African-American, Latino, LGBQT, Native American, and students with disabilities to apply-- and have forced myself to think deeper about my "diversity" (and "disability").

I think a common experience for many with MC-- or at least from my personal experience-- is an unremitting resolve to hide our physical limitations from those around us to persevere, especially given how MC can be hidden by living one's life in a calculated way. Given those possibilities, accepting "disability" for me at least has been a foreign concept.
Moreover, I have also drawn a line between MC as a condition that is more a nuisance and challenging than those like myotonia dystrophy or mental conditions that totally hamper the way those diagnosed live their lives.

So I guess I am wondering what others thoughts are. Just frankly, do you consider yourself "disabled" because of your condition?" Would you consider MC as making you diverse? When asked on a job application do you check the box for "disabled"?

Thanks so much everyone and I really would appreciate any and all thoughts.

Country: USA

Zander, you bring up some good topics for discussion. I never considered myself significantly disabled from myotonia congenita, but I do have other conditions that eventually caused me to be unable to work full time. As far as Social Security is concerned, MC is not a disabling illness...in other words you could not be awarded disability benefits for that alone.

However the word disabiity is used rather broadly as you pointed out. I looked at Columbia University's Disabled Services website just to see how they tend to define disabilities and this is a paragraph from their page:

"Disability Services empowers students with disabilities to realize their academic and personal potential by facilitating equal access and coordinating accommodations and support services for eligible students. This approach is consistent with the spirit of the Americans with Disabilities Act, and places an emphasis on a student’s ability and independence."

So it sounds like they see a disability as something that needs to be accommodated through access (for instance wheelchair accessibility, handicapped restrooms, etc) and/or services to help accommodate the disability which could be an interpreter, transportation, adaptive equipment, etc. I think that is pretty much the case in the workplace, also.

For most of us the main accommodation needed is elevator access for upper levels of a building. Stairs tend to be our biggest challenge. There are jobs where sudden movement might be required and could present a challenge. And environment could be very important, for instance being forced to work in a cold setting occasionally or constantly might cause severe enough myotonia to affect your performance.

One job that I had exposed me to pesticides fairly regularly and that caused quite severe problems for me. I asked to be notified and allowed several days off any time the building or grounds were sprayed but they did not comply and I had severe exacerbation of myotonia.

Because state Vocational Rehabilitation offices do tend to view MC as a disability I think it would be reasonable to identify yourself as disabled on applications. The fact there there would be some accommodations that would help you to function better would qualify you as disabled under the Americans with Disabilities Act. As I recall they are not allowed to ask about your particular disability in a job interview, but I always told my employers about the peculiar symptoms and made sure they understood it didn't affect my mental capacity in any way. Most employers are concerned about costly renovations that might be needed to accommodate a disabled person.

The military does consider myotonia congenita enough of a a disability to qualify as an excluded condition. A diagnosis before enlistment will keep you from being allowed to serve, and if you are diagnosed during your service, then you will usually be given the option of an honorable discharge or a stateside job with no overseas tours of duty. However I don't believe you get any disability pay because it is a genetic condition, not something acquired during service.

I never really tried to hide my stiffness but I had no idea what was causing it until I was in my 20s. Now we tend to joke about it and tell people we have Frankenstein Disease. A lot of people don't like being compared to the fainting goats, but that's another rather humorous way to bring it up and educate people about the condition. I always make sure people know it's not contagious (always their first concern), it's not life-threatening unless we're given unsafe anesthesia, and it doesn't affect intelligence. After that they're fine with it :-)

Jan

Type of Myotonia: Thomsen's

Country: US

Zander, a very well constructed message. Disability is simply a word used to describe someone less able than 'others'. So, in that respect I guess we could be considered disables but also could someone with myopia (if you take it to nth degree). I like the challenge angle myself. I hate to lose at sport or indeed anything especially if its because of this particular problem we have. Personallly (I'm now nearly 53) I think life is too short to start labelling ourselves and just 'get on with it'. Hope this find you and everyone on the forum well and free from bumps on the back of our heads ...

Kev

Country: UK

Hi Zander:

I have Becker MC, with muscle weakness/stamina issues. I had very severe myotonia when I was younger which limited my activities, and had more of a problem with the weakness and muscle fatigue as I got older.

When I was younger, my goal in life was to join the Air Force, and I was worried that I would be disqualified if they discovered I had MC, so for a period, I tried really hard to essentially ignore my symptoms. I particularly didn't want to be underestimated and prevented by others from doing things I could actually do. As I got older, I had to come to admit that, yes, there are things that the myotonia prevents me from being able to do as well as others.

Among them, are about 90% of the jobs in the job market. I don't have enough stamina in my torso/trunk muscles to support my arms above waste level for extended periods of times, and certainly not on a regular basis, which means that working in food service, or a coffee shop, bagging groceries, or working in a retail store where I would be folding clothes frequently is out.

Today I carried a maybe 30lb backpack full of groceries about a mile home from the market, but I had to rest half way through sorting my clothes after doing laundry. I walk 1.5-3 miles most days per week and go to the gym regularly...I need to do this to minimize the myotonia and keep my strength, but I have trouble keeping up with the housework.

I also develop problems with my hands. When my hands become overworked, I simultaneously have trouble relaxing my grip, and develop burning and weakness. I develop tremors and begin to feel an impact on my coordination. I can no longer keep up with the pace of note taking in class, and require the assistance of note takers, and I do not believe I would be able to work a cash register fast enough for an employers liking. I was once harassed on the bus by a bus driver because he began driving before I could pay (which they are not supposed to do), and was then unable to get my fare out quickly enough due to the MC.

At my current job (which is great), I frequently carry back packs of equipment, weighing a few pounds a few hundred feet, sometimes a quarter of a mile, and this is fine because it's for a short period of time and I have a lot of rest inbetween, but I can't carry a 3lb pack on my back for more than a few hours without my back and shoulder muscles cramping up and burning. On the 1.7 mile walk home, I have taken to fastening the pack around my waist instead. I would love to go back packing but I know I would not be able to carry the pack more than a mile or two.

Additionally, despite my regular exercise I am still physically below average, and I think the MC has something to do with this. I have been "jogging" for almost a year now and I can't really do much more than I could do when I started (Jan I think you might have been on to something when you mentioned glycogen storage issues).

Yet I look like a fit, healthy, able bodied person....and in some respects I am (because I try a heck of a lot harder than most people!), but in other respects I'm not. So maybe "differently abled" is a better term.

Type of Myotonia: Becker

Country: USA

Hey zander!
I realy like your question, as it one one ive wondered for along time but ive been too scared to accept the answer "yes".
Im registered disabled and have a blue badge (i live in the UK) but if anyone actually asks i say no. I also agree that we, without thinking do hide our MC, well i do anyway. I would say to you, me and everyone else to not care what anyone else thinks but that wouldnt be a good idea. There will always be people who won't understand. However they will always be somebody who will, though it can be hard to find them.
paige :)

Type of Myotonia: becker

Country: UK