How many people have been able to continue working full-time and/or part-time ? Who has issues at work for a variety of reasons?
So very very difficult. Flares, manageability and dependability are completely unpredictable. I've felt horrible when mind continues to think in my former self "Sure, I can do that!" But in reality it is extremely questionable. I've felt a real loss of dependability, integrity and credibility which have always been and are still deeply important personal values. I dream of work that works with fibro ... seeking a full time position with medical insurance for an unpredictable person who lacks dependability and ability to complete work is questionable. LOL...have to have a little humor. Attempting to finish my doctorate with tremendous difficulty. Terrified as I don't know what I'll be able to do realistically afterward.
How have the employers been in regards to our issues? I don't think they have a clue to what we go through. Day to day is always different. The boss I had when I was first diagnosed asked me to get a letter or something listing my 'disabilities' and and accommodations. Never happen.
I changed jobs this year, less hours and 1 mile away on back roads! Last year I had a scarey experience where I was driving to work and suddenly didn't know where I was or remember getting there! Meds? Fibro fog? I made a change and hope it is a good one!
I tryed so hard to keep my job, in the end I was working very part time. For along time I did not have any diagnosis other than chronic pain. My boss was OK until she realised that it was an on going thing. Then she just wanted to get rid of me it was awful. My colleagues were awful to I was basically bullyed out of my job. They did not believe I was I'll because my difficulties would change from one day to the next. Some days I could do things that I wasn't able to do the next day . In order to try to please others and to try to keep my job, I covered other colleagues holidays, I took on all the parts of the job that others didn't like doing to try to be useful, but it just made things worse. I actually missed out on some treatments as they could not be done outside my working hours. I am not working currently.
When I first got really sick I was working for our family business. My husband was my boss so there was no issue when I started coming in at 10:00 am because it takes me that long to get going in the morning. I worked alone in a quiet office with few deadlines so I worked at my own pace. If I wasn't too busy and I wasn't feeling well I could go home early. I didn't do this all the time, because I still took my job seriously. I was able to pop out for a massage or a Dr. appointment without the hassle of worrying what my boss would think. Unfortunately, our business closed this spring due to shortage of work so I was left unemployed. I don't know what I'll do now. Prior to working for our business I had a very good job working in Finance but it was very stressful and I know I wouldn't be able to do that now. I don't feel like I'm in the position to even sell myself during an interview. My confidence has dwindled. I am a very honest person, and what will I tell them? "Yes, I have all the skills needed for this position, but if it's overcast, raining, snowing, humid, I'm ovulating or having my period, I overdid it on the weekend, or sometimes just because, I won't be able to come in". I feel way too unreliable right now. My goal right now while I'm off is to try and work with my Dr. to find the right medication or take some online couses for a position I could work from home.