Since I've been diagnosed with RRMS, I have noticed that it has affected my job. I work with kids on a daily basis. When the nicer weather appears, we tend to do a lot of outdoor activities with them which I love. However, with my heat sensitivity, I have a hard time keeping up with them. I'm miserable and can't participate in the activities with the kids which upsets my boss. When I try to talk to her about my issues with work and RRMS, she just looks at me like I'm making excueses for why I'm not performing 100% of my job duties.
It's begun to get very warm and we're planning outdoor activities for the kids this summer. I'm excited to be able to do something fun with them, but when I tried to remind them of my problems very politely and professionally, my boss became angry. It's so frustrating. I"m not sure how to deal with someone who seems to lack compasion for things she doesn't understand.
What would you do if you were, are, or have been in this situation?
I know the frustrated emotions you're feeling all too well...heat/fatigue, fatigue/never feeling rested, the DMT (in my case Tecfidera as well since Feb) and adjusting into it, extreme cognitive dysfunction/anxious depression mood swings...it's like my identity was stolen, rug pulled out from under my feet. Since i'm new to this diagnosis as well i have no time tested experience. Living my moments one moment at a time is typically far from graceful! I write A-Z Gratitude Lists to ease my glass half empty negative attitude. In my life there too has been people i meet where i must walk over the "dead bodies", so to speak...people don't know what they don't know, just like we do not know why they "act" the way they do. I don't judge because i do not like to be judged. These people, places, things and situations we are powerless over can bring me down if i attend the losing battle. Also, i say the Serenity Prayer (God grant me the serenity to accept the things i cannot change, the courage to change the things i can and the wisdom to know the difference) and attempt to start my day over...sometimes a dozen times in one 24 hour day!!
My two cents here might help, might not...it helped me today at this moment to remind myself about these things. Fear of the unknown can be crippling, this i know from many, many different experiences. There are powers greater than ourselves that have been there and done THIS...their experience and strength can be a source of hope, them being THERE from being HERE, so to speak. These people, gifts from God so to speak, are here to help me with my spiritual, mental and emotional health issues in addition to doctors. My PCP, Neurologist and others assist me with my physical health, that's their part.
My part rests in collaborating with ALL my resources to attain the best quality of life i can. The old saying, "treat people the way i want to be treated" works both ways with EVERY relationship i have. Hard pill to swallow when i have to keep at arms length or take a break (temporary and/or permanent) from my closest people in my life. I know nothing, absolutely nothing, about being on the outside looking in at my particular MS. For reasons i do not need to know some people just do not want to learn about and work with my MS and what my life inside looking out is all about. Heartbreaking...but far from deadly unless i continue to fight the losing battle.
Trust me, you're not and will never be alone in any of this.
I never considered using God's serenity prayer to help me through this. That alone would be of great help in having the patience to deal with situations at work! Thank you so much!
I’m sorry this is happening and you’re feeling unsupported by your boss. I’m offering some guidance here, but I also want to encourage you to call the Society to speak with an MS Navigator who specializes in employment issues. So often the answer to employment-related questions is “It depends!” and so it can be really helpful to have a conversation.
The first step is to consider the basics of the ADA and who it covers. If you have a disability and are qualified to do a job, the Americans with Disabilities Act (ADA) protects you from job discrimination on the basis of your disability. Under the ADA, you have a disability if you have a physical or mental impairment that substantially limits a major life activity. You must also be qualified to perform the essential functions or duties of a job, with or without reasonable accommodation, in order to be protected from job discrimination by the ADA. If you work for an employer with 15 or more employees, you may have the right to request reasonable accommodation under the ADA. Although the basics of the law are relatively simple, the steps to initiate these protections can be complex and subtle. So it might be important to make sure you understand how the law works before you speak to your employer or potential employer about your accommodation request.
Maybe there is some type of reasonable accommodation that can help you on the job – perhaps something like a cooling vest or other cooling garment
? The purpose of accommodation is to provide you with the tools you need to apply for a job or to do your job: specifically the essential functions of your job. If you think your MS is affecting your ability to do your job, I encourage you to explore accommodation possibilities in order to make sure you are successfully performing your duties. Here is some additional information to assist you with the points listed above:
The Win-Win Approach to Reasonable Accommodations
The Job Accommodation Network is a free and confidential resource funded by the Department of Labor to provide technical assistance related to Title I of the ADA. They can also provide examples of accommodations that have been used to address specific impairments, including MS-related impairments. Their consultants may be reached by phone, email, or live online chat during business hours:
JAN - Job Accommodation Network
Your regional ADA center is another free resource that can provide information about the ADA. Follow this link to locate the center that serves your area or call them at the number below (the phones will automatically route to the center that serves your area code):
Contact Us | ADA National Network
Toll Free Voice or TTY 1-800-949-4232
If you would like legal advice about your situation, please use the following resource to locate attorneys in your area:
National Employment Lawyers Association
Please don’t hesitate to call us to discuss further: 1-800-344-4867, option 1, and ask for the Benefits and Employment Team.
First off, I am so sorry that you are having to deal with this - certainly making an already difficult situation worse! I don't have any experience with a job issue, but I do have major problems with the heat. I was diagnosed with RRMS in August of last year, after my eyes went to seeing double while on vacation in the Outer Banks of North Carolina. Heat certainly is an enemy! I have found that wearing a cooling vest under my clothes has helped tremendously to keep my body cool while outside. My son just turned 8 years old, and I was able to run around outside with his friends for his birthday party (I live in Virginia, so it is hot already)! You can apply for a free vest through the MS Association of America at http://mymsaa.org/msaa-help/cooling-products/
. There are many other styles and types of vests available as well. A quick google search for "cooling vests" will get you there. Again, I am so sorry. I hope this info is helpful.
I actually found what you spoke of from looking it up on Google a couple of days ago! I'm really hoping that my application goes through and is approved because this is exactly what I need! I'll be able to enjoy so much more if I'm able to keep cool! Especially when we take our kids outside to play during the summer.