Thanks to my dear sister for recommending the linked website below.
I have periodically struggled with raising awareness of my chronic illnesses. In some situations the act of talking about chronic illness does more than raise awareness, it can become a black mark against you – a burden to which you have to work against. Bearing in mind we have so much to cope with, we could do without the increase in discrimination that inevitably comes with talking about chronic illness at work.
So many of us have no option but to work despite any symptoms we may experience. As well as posting reasonably regularly on my blog, I also have a full-time job as a secretary and regularly bake treats in order to raise money for various charities.
While I want to raise awareness and money for my chosen charities: Endometriosis UK and Verity – PCOS Charity, I work full time and need to have my working life as stress-free as possible. It would seem perfectly logical to talk to friends at work and raise awareness. However, I don’t want to be seen as remotely incapable. Because I talk to people at work about chronic illness, I regularly over-work myself just to ensure that no one could ever get the hint that I may be enduring symptoms. It’s little wonder that I spend a good portion of my weekends in bed recuperating. It’s the price I pay for trying to have it all.
The link my sister shared tells of the inspirational story of US Rep Gabrielle Giffords who returned to work after being shot in the head in January. Of course, not all of us will be hailed as heroes when we return to work after achieving a diagnosis although we truly ought to be.
As much as I agree that returning to work is a good idea: psychologically it’s better to have something other than symptoms to focus on and to have goals outside; however, there are times when work simply isn’t an option. I would hate to think that we would be encouraged to feel guilty about being unable to return to work. Yet, I’m sure that’s the problem a lot of us face. In a society that encourages everyone to “Figure out a way to keep working”, it’s too easy to blame yourself if you are incapable of handling the rigours of working life.
When I was first diagnosed I didn’t take a significant amount of time off work. In fact, I had one week at home after my first surgery and went immediately back to full-time work. I spent years trying to get the balance of my symptoms, medications and even surgeries right. I struggled with my working life. I had lots of side-effects from my numerous tablets. My neural-inhibitors in particular were very odd to get accustomed to. I felt vague and woolly-headed. Needless to say, it was inevitable that I was making a number of mistakes at work.
Even though I struggled, I insisted on working through the issues without discussing my issues with anyone at work. Perhaps I would have come away from that place feeling better about the organisation had I forced them to acknowledge my limitations and discuss ways of making my working life easier. However because I did not feel comfortable discussing any weaknesses that I may be experiencing, we will never know if it really was the right decision to hold back that essential information.
Of course now that I finally have a pain management and hormone management programme in place, I am more capable of handling moderate amounts of work stress. It must be noted that it’s taken a number of years to get to this point. These years for me were spent struggling with changing relationships in my private life, struggling with the various symptoms and side-effects, struggling with a full-time job, struggling with the stress I put on myself to seem normal.
While I think that a job can be beneficial for those of us with a chronic illness, it is essential that we treat ourselves gently, to have realistic expectations of ourselves and to ensure that we aren’t damaging our health by “figuring out a way to keep working”.