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Have any of you in the US requested any sort of ADA accommodations at work and do you have any advice? I am considering it. I am currently a contractor and I am afraid it might impact my job, but it already has. I have worked in my field for 17 years and have always been regarded as a slacker due to my condition...extension of the way I was regarded in school.
I miss work at times, show up late once in a while, sometimes miss details due to exhaustion or distraction due to pain. I have had bad luck when I’ve told bosses in the past, they don’t make an effort to understand the condition and it seems to make things worse as far as their attitude toward me. When I had my genetic testing done a few years ago, they found Thompsons as well as an unknown mutation, which I believe contributes to my weakness and exhaustion.
The weather in the NW is changing, and I was completely laid out yesterday and stayed home. I’m getting sideways looks from my supervisor, and I feel a pattern repeating itself. I would love to not go down this rabbit hole again, since I know what is wrong now and I have the diagnosis. I would like to use the services available. I will have to start by talking to my contract company, they will organize a meeting with my employer. I am nervous.
Type of Myotonia: Thompsons and another unknown
Amanda, independent contractors are not considered employees under the ADA, so they do not have to make any accommodations. This is a very good FAQ about the ADA:
Employment Rights Under the Americans with Disabilities Act
If you were a regular employee you could ask for accommodations related to MC such as a warm environment (for instance I was allowed to keep a space heater under my desk), access to elevators rather than having to use stairs, and notification of any pesticide applications with a few days off work if needed.
Rather than just setting up a meeting, I would advise getting a referral to an occupational therapist. They will meet you at your workplace and evaluate what might be helpful to you in your work environment. Since they are healthcare professionals it will have more clout than you trying to explain your condition to the employer or supervisor.
You can also use the services at your state's Department of Vocational Rehabilitation. They were extremely helpful for me when I was looking for jobs that could accommodate my conditions. They also have a list of employers who will hire people with disabilities. You have to go through an orientation, then get an appointment with a counselor, and then they will order any medical evaluations or occupational therapy consults. It's not a fast process, but if you meet the guidelines (I think they have income restrictions on some services) it's well worth getting registered.
If you have performance issues related to pain, fatigue, etc, then it's probably best to get evaluated and find the best fit for your condition. That may be telecommuting so that you can work when you are alert and feeling better. I certainly understand all the problems and have had some really bad bosses in the past. But I have had some great ones, too.
Did you get gene sequencing for the SCN4A mutations, also? They tend to cause more weakness. I have Thomsen's but also one variant in SCN4A which is probably why I'm so much more sensitive to potassium and cold. And of course we're just as susceptible to fibromyalgia and other conditions that cause fatigue, pain and weakness.
This is a good article you might want to share with your supervisor. It's specifically about periodic paralysis, but Thomsen's is an ion channel disorder with very similar symptoms.
"Not Crazy or Lazy"
Type of Myotonia: Thomsen's
Sorry, just getting back to this, I was really disheartened by my situation for a bit. I am not technically an independent contractor, but I have opted not to make a case of this, I have not had good experiences in the past. I had been missing a lot of work due to exhaustion, but taurine seems to be helping a lot with my fatigue, sleep issues and anxiety.
I let my coworkers know about the possibility that I may ask for help with the physical aspects of our job, and they are all very nice about it and never draw attention to it. As it stands, my manager has barely spoken 20 words to me in a year, so things seem to have worked out for the best. My coworkers and I joke about it lightly - I am lucky to work with a good group. I sent them some links and they all 3 read them with interest.
If I need to lift something heavy, I lift it a few inches off the ground a few times and then it's easier to pick up.
Thanks for the info and suggestions Jan, you have always been amazing to be so helpful to all of us lost lambs on the web :)
I will keep your suggestions on file for future reference.
I have not been tested for the SCN4A mutation - my testing was in 2004, and I had an "unknown" mutation, could that be it? I have it on my list to ask about the status of that at my next specialist appt. My symptoms do seem to align with potassium sensitivity, though.
Amanda, if you have your test results you can email them to me and I'll look up the association.
If you can get your doctor to write a prescription for an occupational therapist, they can come to your workplace and evaluate your daily tasks, then show what you can do to make it easier on your muscles. Sometimes they suggest some adaptive equipment or do a functional capacity evaluation to determine how much you can lift, how long you can stand, etc. It will also give credibility to your challenges with coworkers and supervisors.
This describes the FCE - it's good to have, even if you just use it as a baseline in case you get injured later:
Functional Capacity Evaluation
I'm glad the taurine is helping!
Type of Myotonia: Thomsen's