I’ve had a love-hate relationship with work for several years now and I think most of us with chronic illnesses can relate to that. We want to be self-sufficient. We often tie our identity and self-worth to working. We like to feel functional and that we are contributing to society and to our families. Work makes us feel good about ourselves. It is also a distraction from thinking about our pain. It gets us out of our minds and out of the house and engaged in the world. Not being able to work at all is a huge adjustment and one I have yet to make because I have not been able to give up that piece of myself yet. Partly because I feel like if I take away all the benefits I’m not sure if I can fill the void sufficiently. And partly because I know the insane battle the go on disability associated with invisible disabilities such as fibromyalgia and chronic migraines… and I don’t have much fight in me these days… it seems my personal style of cooperation is to try and just do what others want because it is easier mentally even if the long run it is substantially more painful physically and emotionally. And partly because I know if I tried to go on disability and failed, then knowing I could not have that avenue open to me might be the straw to break the camels back.
Unfortunately, we all have to ask ourselves whether work is working for us. Are the positives that we get from work sufficient to make up for the negatives. And what are the negatives? Can they be overcome in different ways? Can we change jobs? Work fewer hours? Work from home? Get accommodation? Or have we exhausted all these options already?
Getting out into the world and being engaged with people is a huge benefit. I know when I am on short-term leave I tend to retreat and isolate. I have to force myself out into the world. Because everything triggers pain and if it is not Necessary then I’m less inclined, and I’m an introvert that does not exactly thrive on people anyway… so hermit mode is what happens. And I like interacting with customers and co-workers. I may be an introvert but I have carefully cultivated a facade to mask my pain of laughter and chattiness. So I actually engage quite well with people. My co-workers have been awesome to me. And this is definitely not always the case with chronic illness. People can think we use our illness as an excuse to miss work or to work less. Or that we are chronic complainers and are ‘always sick’. Some seem sympathetic to our faces and behind our backs mock us. Some are sarcastic about our illness. Some try to understand but end up being insulting by comparing their minor temporary aches to our acute chronic pain… or say that if we only did ‘such and such we would feel better’. Some people are constantly negative and are hard to just Be around. I have not had too much trouble where I work, or I have not associated with anyone who was like that. I have worked with people who genuinely cared that I came to work in as much pain as I did and tried to function with it. And genuinely cared when my employer did not. And genuinely was not bothered when I was forced to miss work due to my illness. People like that made it easier for me to be open and honest about my disability.
I could say how bad it was… although often I did not. I could explain the more complex and strange neurological symptoms of migraines that complicated things. I could talk about treatments. I could be more honest with such people and I like to be honest about my disability. For years I never mentioned I have fibromyalgia to anyone at work because of the stigma and because even doctors deny it sometimes… I’d rather not get into it if it is that hard to explain. But if people understand then it makes things easier. They can see how the pain and other symptoms affect you to some degree and they can understand the struggle. But even the most understanding of co-workers will not stop a person from feeling guilty for calling in sick so often… for being sick so often. Because that is not what an employee or a responsible adult does, right? I never could convince myself I had the right to be sick, maybe because my employer didn’t believe I did. So the atmosphere you work in is a major concern. if the people are horrible then sometimes you need to consider working elsewhere and I have done so in the past for that very reason. negativity sticks to us. Sometimes we feel we have no choice however and so we stay and that can cause a great deal of stress. But giving up that daily human contact might not be worth it in the end.
Discrimination in the workforce is not always as obvious as we think either and this as well can be a huge stressor. I never had a problem with the people I worked with but I did have a problem with management. Not at first and not in ways I noticed at first. It was insidious. And over time. And when I think back on it, very cruel. There are managers who will motivate you. Who will accommodate you. Who will help you to work around your illness and make you feel productive, functional and feel like you are still able to succeed.
And there are managers who will make you feel guilty for calling in sick. For being sick. Who will tell you how you are failing yourself, your co-workers and your customers. Who will imply if there are layoffs… you need to be concerned because you are the least functional. Who state if you miss more work you will be demoted… for your own good. You do state if you only did such and such you would be better… like they are doing you a favor by giving you advice on how to live your life. I felt horrible for missing work and anxiety about going in the next day. I dreaded ‘meetings’ because I knew I would be made to feel guilty, ashamed, worthless and often there were veiled or not so veiled threats. Now at times, there were some things that were likely discriminatory and illegal. But some things were just words and words… over time were worse than the threats honestly. When I was threatened with a demotion to a position that would make my migraines worse and I felt my job was threatened, this was the consequence if I missed one more day (mind you I had missed a lot, although they did a year later have this ‘reviewed’ by my doc and the insurance company and was proven to be perfectly valid, but at the time they thought threats were more appropriate than the proper channels)… I decided to try and push through the pain and no matter what get to work, just ignore it and get there, take whatever I needed to be there even if I could not really function.
So what are the negatives about working? I found them to be: When I work full time all my effort is for work and there is nothing left over at the end of the day for anything else. I had no social life. No energy. Barely any housekeeping got done except on weekends. My spouse cooked and did the groceries. There was nothing left over. Just work and home. And when I got home I was in acute pain. Because work for me meant I would get a migraine (which I might treat or might not, because I can only treat three a week, which leaves the rest to be dimmed by painkillers somewhat)… so by the time I got home it was horrifically acute and I just wanted to lie down and sleep. So no chatting with my man. Just sleep. Then I would get up and he would go to bed for work.
I also didn’t like that work was a constant struggle. With chronic migraines and fibromyalgia, the pain was always there. Migraines were up around 6 to 9 on the pain scale over and over. FM pain was not bad but the cognitive impairments added to the migraine ones. And I made so many data entry mistakes. And forgot policy. And corrected my own errors when I found them. My thinking was hazy. The pain difficult to impossible to ignore. It impaired my language skills, written skill, verbal skill, my vision. The worst was when it hit my digestive system… not fun. Days when I get up with a migraine I didn’t want to drive cause I knew it would make it worse, and the vertigo worse. And I managed to do this for seven years at my current employer. But it is torture. Plain and simple.
There were days I would pray for a stroke or a heart attack. Just for a rest. I knew I couldn’t keep doing it. And I ended up on short-term leave four or five times as a result… not that these helped or changed anything. Pain like that consumes you. You focus so hard on getting through it. It is survival mode. And nothing else gets through. it is hard to remember anything else because you are in so much pain and foggy that nothing gets into your long-term memory, so your life from all that survival mode is just a hazy blur. And you have to wonder if that is worth it? Being in so much pain all the time that the goal is just to get through the hour to get through that day to get through that week. Nothing else matter. Is your job worth it then?
Then if you so get on long-term disability you have to find productive ways to fill that void. You definitely have to ensure you deal with any feelings of guilt and low self-worth that may arise. We most definitely can be productive members of society and not work a traditional job. And sometimes we find unique job opportunities that work with our disabilities. Sometimes we volunteer. Sometimes we pick up passionate hobbies. And sometimes we support causes.
Anyway, the pain has consequences. I am not sure the people making the decisions for our lives realize that.