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 our 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 personality style of cooperation is to try and just do what others want because it is easier mentally even if the longer 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 less 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 lay offs… 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 threaten, 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. Well, this never works, and the migraines became acute and daily and I became emotionally fragile from trying to endure them. Then an acute status migraine came along as they usually do, and they are more emotionally volatile and constant pain. I could not go in. And so… I tried to kill myself. And you have to ask yourself at that point… was my job worth all that? I put up with all that for years and years because I was made to feel like I should feel bad about being sick because a part of me did feel guilty about being sick. So don’t ever, ever underestimate the power of a hostile work environment… it is corrosive. And if you have assumptions about your self worth associated with work or your own guilt, one person in authority can magnify that. Add that to the stress of feeling like your job is constantly being threatened and you are never ever doing enough to please them no matter how much you do and how much pain you are in? And don’t ever think it is acceptable for an employer to treat you like that. I got angry After I came back to work from recovering… coming back to the same environment and the same comments. But I never should have put up with any of it. Not the comments and not the threats and not even the actions that were borderline illegal. If you have an employer like that either go above them, go to your HR department or throw the comments back in there face and tell them how discriminatory they are. because sometimes I wonder if it is just incompetence in dealing with an employee with a disability that leads to this sort of situation. Maybe it is the mindset of treating them like a child skipping school or something. Or thinking if they threaten you suddenly you will tow the party line like you were never ‘that sick to begin with’. And if it is incompetence they need to learn the proper way to handle the situation. For years my manager mishandled me and for years I took it and yes it increased my stress and decreased my self-esteem. And maybe it would never have made a difference. But we have to deal with a lot of pain and acute pain can cause depression and anxiety (and migraines in particular as a prodrome which can cause intense severe depression if short in duration, but that is what got me, along with severe sleep deprivation) and then that manager doing the same thing can have horrible consequences to someone emotionally and mentally. Honestly that infuriates me. But enough about that. Seriously don’t put up with it. You deserve better.
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 heartattack 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?
So what do you do when you realize you should not be working? Where do you start? I’m asking these questions myself. I have a doctor who is rather indifferent and I’m not sure he would support me for disability. That is not good. But firt step for me was to get on short term leave for work. Then go to my specialist. Then get a shrink… I never did that before, but I think doctors and speciasts need to see the emotional impact of the illness to help make their decision. The next step will be getting the neurlogist to sign me off for a continuatin of my short term and hopefully put me on long term. I got a 50/50 shot I’d say. Then if go for more permanent measures there is CPP and AISH here in AB Canada which again I would need their support on. Also a good pointer is going to like your local fibromyalgia society (or MS society… or any of the disability society if there is one) to a) get support and information and b) see if they have a free lawyer who will help you if you are declined. We need friends in arms for these things. I swear insurance companies just like to decline for the sake of declining.
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.