Polymyositis & Dermatomyositis Support Group
Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.
That being said, last year I was working full-time and began experiencing worsening of disease symptoms. I have psoriatic arthritis (autoimmune myositis has since been ruled out) and my health took a rapid decline about a year ago. I began to have eye involvement, associated with the PsA, and I was having difficulty functioning at work. I was missing more and more work, so I made the decision to talk to my boss about it. After that, I do feel like I was treated differently. Eventually things got to the point that my husband and I felt it would be best if I took a medical leave. Unfortunately I am now on disability.
Anyway, since you are with a new company, I would probably give it a bit more time before you share something so personal with them. If you are concerned about it being held against you, you could always talk to HR first, that way it is on record in the event that you are treated unfairly.
That said, my career came to a screeching halt. They are accommodating me but I am overlooked for projects and promotions. I suppose that is in my best interest anyway but as we all know, with this disease, ability is flexible and can change from one period of time to another.
If I were in your shoes, I wouldn't tell them unless it impacts your ability to do your job.
I didn't tell them about my illness until I had no choice because I was taking so much time off for doctors appts. I tried to arrange them on the same day, so many days I would work a few hours take a few off to see 2-3 doctors and then come back to work. Other days I would take the entire day off. Of course my vacation time went to sick days, a day here and a day there. One of my coworkers tried to give me her sick time to cover my days so that I didn't have to use my vacation time and could take a true vacation. She didn't know that medical copays didn't allow me to be able to pay for a vacation. The law didn't allow her to give me her sick time and she had used up her vacation time which the law allows. It was such a wonderful gesture and I will never forget it. I live in FL and she lives in MO, but we chat via instant messenger as if we are in the same office. They know that I say that I am in unbearable, constant pain, but they don't understand it and a former supervisor that I had until about a month ago couldn't get it through her head that stress free means mental stress free also. I went out for three weeks while I applied for short term disability and had to go back to work when the insurance company denied my STD, I cried so hard that I am surprised that I didn't have a heart attack if that is what a broken heart means. but I haven't given up. I have to take the week of May 20th off without pay for another infusion treatment. I have not and will not share with my employer my mental confusion and memory lost, but I will share it with the insurance company. It may make the insurance understand that I can't do my job to the best of my abilities and can cause my company major financial losses. Airlines love to charge huge fines for small things, such as forgetting to put in a period or letter. Telling my employer of my mental condition will probably cause me to be fired. I am sure that they will come up with a reason other then my health, but as much as I want to stop working so that I can work on healing my body and mind, I don't want to lose my insurance, It is the best plan I have ever had, plus my treatments and copays are huge.
What we go through just to wake up each day and try again. I never give up, but would love it to be better than before. I was thinking yesterday that I finally got to a position in my life where I could take vacations and could live somewhere nice, but then my illness stepped in and emptied my purse even more and I can barely walk, but I am going to do what I know but have had a hard time doing until today. I am going to give it all over to God and let him lead me. I know it won't be easy, but I can do anything that I set my mind to and if I have to tell them at work the whole story of my illness so be it. I believe that we are protected under the ADA act. I need to check it out.
I told my principal about my disease. I taught music K-4. I did not think that it would be easy for me to hide DM from 1376 children, parents, and the community. I taught for two years with DM. I retired when I was diagnosed with secondary pulmonary hypertension. I had to consider so many things in my job with the DM. I was well liked in my job and considered a valuable employee. My boss accommodated my illness and doctor appointments well. My colleagues were always supportive. I never missed work. I made my appointments late in the day so I never missed teaching a class.
You will need to make your own decision on this tough subject. Only you know your boss, working conditions, job requirements, etc.. Every job has its own unusual situations where your good discretion will guide you to stay quiet or speak.
Good luck on your choices.
I was a 1st year teacher and fell ill due to undiagnosed DM. I was hospitalized for 12 days, and bed rest for an additional 14 with physical therapy. I lost my teaching job because I wasn't tenure, and they didn't have a FMLA or any additional information about my condition.
I now work in a hospital. I wear a medical bracelet, and I'm open to those that ask. My boss knows, and he's very understanding. However, if you're not close with your co-workers and don't have a FMLA on file I suggest to keep it low. It really depends on how much the illness impacts your quality of work. There are certain things that I am unable to do at work, and my coworkers know that, so they assist me. I've explained my situation to them and they're very understanding. If I would have remained quiet I think I would have looked lazy to them for not doing certain tasks. I would talk to those that you trust, first.
Best wishes,
Emily