After taking a couple of weeks off, I am now ready to go into my job search again. I have spent these few weeks reflecting on what went wrong, and what could be done better. It is very very sad but true- my RA had formed a big component of my work related problems. It is not all negative though. At times, I feel that I can understand and deal with issues better because of what I learned from RA, fibros etc.
However, it is undeniable, that my RA and fibro was a big set back in many ways, and may continue to be, unless I could overcome them.
- My boss see me as "chained"- not able to find another job easily as I only wanted to work part-time because of my health.
- I am seen as "unreliable", because of my RA flares. Although I only had 2 major flares, which would stop me from working even if I wanted, that was enough.
- Work arrangements- some colleagues resent my "special treatment", and wanted the same "privileges" extended to them.
Although there were disability protection acts etc, these are really unclear. What does "reasonable adjustments" mean? That was really entirely up to the employers to decide. The are plenty loopholes the laws are worth another entry!
I find the Employment section of NRAS very helpful and informative.
The problems that I (and many other RA patients!) faced at work is not something which I could resolve entirely on my own, despite bring out the whole lot of coping skills I have and getting full support from my family.
Communicating clearly about your condition with your colleagues and boss helps a lot (but may backfire sometimes). Making concessions (like getting low pay), and putting in extra hours to ensure quality work helps too (although you may see this as some sort of discrimination/exploitation!!).
However, improving the perception and understanding of other people about RA needs more than these individual efforts! It is all too easy for people to attribute your limitations to your lack of personal discipline rather than RA. How often have you heard " I am tired TOO", when you say you are fatigued? There is also an element of unpredictability and invisibility about RA's up and downs, which other could interpret as "inconsistent", and "lack of evidence". Ie, they may suspect that you are really waking up late when you say you have bad stiffness and need to come in 1-2 hours later.
Improving the work situation of patients with RA it is something that more formal protection in terms of regulations is needed. As RA patients, we need to create the awareness of these issues not only for our own benefit, but for all RA patients.
I not only want a job. I want to be able to work optimally, so that I can do my best! I want the chance to do what I can do based on my skills, education and experience. All I need is some minor modifications to get there. Can these be done?