Deciding to stop working.
One of the most difficult challenges those of us with chronic conditions face is deciding when it is necessary to stop working. Many people dealing with chronic illness are able to stay at their jobs if the demands are compatible with their energy level and treatment needs, but some have to decide to move to less demanding work or stop working altogether. It’s a very personal decision and one not lightly made.
In the last few months I’ve discussed this issue with many women (and an occasional man, most of my support network is female). People have different thresholds for saying enough is enough. Some will work until they practically drop dead, while others decide they need to stop while they still function to some extent in an effort to slow or halt disease process. Sometimes the need for frequent doctor visits or treatments interferes with work so much they have to quit while some have a flexible schedule that can accommodate frequent absence for appointments.
The decision is usually complicated by financial concerns. A few people are lucky enough to have a spouse who makes enough money to pick up the slack and whose job provides health insurance benefits. In my case, having a disabled husband who doesn’t work, it took much thought and exploration of resources for me to work out the financial end of things.
After my heart attack, I fully expected to return to work in a few weeks and get back to a normal schedule. My leave was extended a bit following a second hospitalization one month after the heart attack, but after that I did well in cardiac rehab and started working again. I noticed frequent chest pain at work, but denied it at first. I got back to my regular 36 hour per week schedule after 3 months or so. I was tired, but that didn’t surprise me. I tried to keep up my exercise hoping to improve my endurance, but I was often exhausted and ill on Mondays following my 3 12 hour days. Although my job was pretty easy, with a lot of down time on the weekends, I still left early at times due to not feeling well. Within a few weeks I was in the hospital again with worsening symptoms. This led to medication changes, more testing, and a round of EECP (Enhanced External Counterpulsation) treatments that were quite time consuming. I never returned to full time work. My FMLA (Family Medical Leave Act) days began running low. My co-workers’ patience began wearing thin. I still had chest pain at work and days of sick exhaustion after working. Finally after another hospitalization, my fourth in less than a year, I decided I couldn’t keep going. Rather than improving, my condition was worsening. I felt that in order to have hope of healing, I would have to reduce my stress and energy expenditure significantly. I took a medical leave of absence and started the clock for my long term disability insurance benefits.
I felt a lot of guilt and shame at first about stopping work. I knew I was sick but knew that other people were much sicker than me. I was also still dealing with my doctors’ reluctance to attribute my symptoms to a cardiac cause. Whatever the cause, my symptoms were disabling and I had to do what was right for me and my family. None of the tests we did showed other causes for my symptoms, but I was still feeling I had to prove myself. The process for applying for my disability insurance benefits was disheartening, especially when the doctor who agreed to document my condition flaked out. I started the process of applying for Social Security Disability (SSDI). Even if I eventually get better, it takes so long to get through that process it is foolish to wait.
In some ways, my condition has improved since I stopped working. In some ways it has worsened. At least I rarely have those days of feeling so exhausted I am ill anymore. I try to stay busy with constructive activities that are within my capabilities and stimulate my mind. I still have to rest in between outings and rarely plan more than one or two things outside the house in a day. Sometimes I can’t manage that much. But I am doing all I can to improve my well being and that’s what counts.