I wondered if anyone here had the same problem and how you dealt with it.
I was diagnosed with Fibromyalgia and CFS a year ago after years of begging for a diagnosis with doctors (Could write another long essay about this, perhaps another time). I thought that getting to that point would mean I would something especially with my employer.
I am a IT consultant/project manager (basically I love coding but because I am a girl it's harder to be a respected programmer... another long rant about that, but maybe in another forum)
In August last year an agency approached me and spoke about an exciting job opportunity for the exact same job near my house. I thought this was fantastic as it would mean I don't have "to waste as many spoons" on the commute. The job involves two days travelling per week and I can claim back the time which I have taken travelling out of hour as holiday. They would prefer if I balance my week to 37.5 hours a week. there was even a mention that if you had to work late because of travel you were allowed to start later (after 10am). I thought this was brilliant because I could manage my disease with dignity.
I made a HUGE point that I had fibro and I didn't want to take the job if I wasn't allowed flexible working condition. I spoke a lot about it to the directors at the interview, my manager on my first day and it seems we wouldn't have a problem. So I left a job which was secure for this new job, thinking my life would be easier and I would have the dignity of being able to manage my disease without having to make a fuss about my condition. I was very clear!
Having fibro and still being able to keep a full time job is a matter of pride for me. Having to explain I am having a flare up to every Tom Dick and Harry at work and that's why I can't do this physical activity at work is soul destroying. I don't think I need to explain to you guys how it feels. It's so hard to be an independent woman but I am not giving up just yet. I thought this job will allow for me to keep my dignity and not to be reminded I am the girl with the invisible disability.
Boy was I wrong! To set the picture of the culture of my company, I was strongly encouraged to join the running club when I started. Once felt humiliated by a director (who knows my disease) who instead I used the stairs rather than the lift to get to our top floor office. I had to travel to a client for an all day training session, I wasn't going to jeopardise my work for him that's for sure. Our company is splitting in two offices and only offers us bicycles to commute between the two locations (Imagine the number of spoon I would be losing if I did that). Not too worried about the last one, I have a bus pass but I am just trying to pain a picture.
So it turns out my boss are health conscious (trying to be polite) and believe that a healthy amount of exercise will cure all. I was even told as such by a director. It's not like I am lazy, I walk 20 minutes every day. Do all of my stretches and I practice the mediations I learned in my pain management clinic. I do what I am told by my physio and she says I am doing well in that respect. she even said it is a credit to me than I am managing my disease so well. I exercise more than most people I know but less that they think I should. I don't even know why I need to justify myself. Basically, I try my best and I really feel my best isn't good enough.
I can live with being called lazy. From my experience the medical profession thinks we are lazy and it's all in our head (appart from my physio and the pain management team, they were wonderful to me). My loved one sometimes forget I can't always do what they need me to do. So why should my employer be better?
I had a good review and a pay rise, so I must be doing something right at work.
What bugs me is that I average 42 hours a week (a full half day extra work every week). I travel several times on Sundays and never had that time put back as holidays. And to top it all off, this week I travel to my clients on Sunday worked a busy working day on Monday, travel for 4 hours to the next client, worked a busy day again, travelled home for 5 hours, got home at about 21:00. I averaged 11 hours of working both Monday and Tuesday if you count the travel. Needless to say Wednesday I was entirely broken. I had no "spoon" to give. Missed my bus because I couldn't find my pass, ended up 20 minutes late at work. I was told off for being late.
What do I do? I know I am protected by law but I don't it to come to that. How do I overcome the stigma of having fibro?