I have already posted on Being Sick & the Sick Role that lays the foundation for this series of posts. I also posted on how we don’t choose to be sick, don’t look sick, don’t want to be sick, and how tricky it is to help people understand how we are sick so we can get the help we need without having them treat us like we are sick. You can find that under Who Volunteered Me to be Sick. I have a lot to say about work and chronic illness so I am breaking it down into several posts.

When people have an acute illness and take on the sick role, they are exempt from the usual work, family, community, and other obligations while they are sick. When we get pneumonia or the flu, or have surgery, we can take some time off and in fact we are expected to do this to aid in our healing. What does it mean when we have a chronic illness where healing probably won’t happen and remissions may not last long? What does chronic and possibly degenerative mean for our responsibilities to our families, our work both within and outside the home, to our community and church work? We can’t take a few weeks off, or even a few days, to get better because chronic means forever.

The work of my paid job was of central importance to me at this phase in my life but for many people the work they do to maintain marriage and family commitments are central. For most of us we want to do it all. My children were grown but I worried that I wouldn’t be able to hold up my end of my marriage commitment. My husband and I were a team that shared the responsibilities of running a household. Because of Fibromyalgia I had become so de-conditioned that during that first year I had to take a nap after I took my shower in the morning and before I left for work. When I came home from work I was so exhausted I could feel my facial muscles sag. I slept through the weekend to refresh myself for the next week. I tried to do my household tasks but my husband had to take over some, some didn’t get done, and we use hired help. I wanted to enjoy the friendships I had with my grown children but I didn’t have the energy. I wanted to do grandma type things with my grandchildren but I was too tired to even set up a date with them.

I felt guilty that I dreaded social outings with friends and Jim was afraid that I wouldn’t be able to go on camping vacations which was an important common interest we shared. I feared family gatherings at our home because they were so exhausting and I hated myself because I didn’t enjoy them. My future held no guarantees; no one was saying that when I got well I would be able to resume my commitments to work, family, friends & community. No one was even saying “when you get well.”

I have talked to friends with FM who have young children and read posts on discussion boards. These parents feel guilty because they don’t have the energy to play with their children. Christy told me how guilty she felt when she tensed up whenever her young son would clamber onto her lap because of the pain it caused. Although the pain and fatigue caused by a chronic illness can get in the way of doing the work we need to do, having family responsibilities that we feel passionate about, like raising children, can also push us to do what we need to do in spite of how we feel.

During the first couple of years after diagnosis, I worked with my doctor to find the combination of treatments that addressed my symptoms and I slowly increased my ability to function both at work and at home. I also engaged in a continual cost/benefit analysis to determine what I could and couldn’t do. My struggle comes through in this journal:

What does it mean for me to be sick with Fibromyalgia? As I typed that sentence, my anger grew and I wanted to once again scream “I won’t be sick!” But I do have Fibromyalgia which means that my body is abnormal – I have a sickness – I am sick.

Most of the time, however, I feel stable and can still think and problem-solve and teach and write and work with colleagues. Most of the time I have enough energy to make our home enjoyable and esthetically pleasing. I can still have fun with my husband, family and friends, as long as it isn’t too much fun. Most of the time I can meet the needs of the people around me. (5/05)

Now that I know I can be productive some of the time, I think I am willing to accept that I have some limitation because I am sick. In fact I can be most productive if I take good care of myself. No one else; colleagues, administrators, students, family, and friends, seem to think any less of me because I am sick and have to make choices about my level of involvement in order to take care of myself. (5/05)

People with chronic illnesses fear not being able to meet their obligations and grieve their inability to participate in the world around them – they don’t want to be exempt from participation. We remember life before our chronic illness when we were active and engaged and had lots of energy. We remember being able to do hard work, take a short break and then get on with something else. We even remember being able to multi-task!

I was at the peak of my career when I was diagnosed and my work was a major part of my self-concept, and my self-esteem was tied to my work accomplishments so most of my journal entries dealt with my ability to work. Here is an entry a year and a half after being diagnosed:

I know what work I can do from home and when I need to be at my office and I know the price I have to pay for doing it. Is it worth it? What meaning would I have if I didn’t do it? I no longer have the energy to do the work there is to do and do it well. Is it fair to do the work if I can’t do it to my best ability? Mentally I am able to do what should be done and I know how to best do it. Physically I just can’t do it. I know I am going to let lots of people down. (7/05)

This entry also expresses my concern over being able to live up to my expectations for myself – my perfectionist tendencies. The experts indicate that a frequent characteristic of people with Fibromyalgia is that we tend to have high expectations for ourselves and are high achievers. Here is what Dr. Staud wrote on the FibroTogether web site:

One interesting thing about people with fibromyalgia is that many of them were high achievers before getting sick. What they consider “normal functioning” is extremely high—they could do two jobs, manage three kids and a husband, and a household. They are frequently setting a very high bar for themselves. It’s natural that they would feel distressed that they can’t do as much anymore. What they need to realize is that what they may be able to do now is what many other people probably would consider normal. So it’s important to be realistic in understanding of your limitations and abilities when breaking tasks up.

This discrepancy between what I considered “normal functioning” and how others evaluated my functioning is expressed in the following journal entry. I was on a semester-long study sabbatical but was continuing to carry out some of my administrative responsibilities:

Yesterday I had lunch with Bonnie and Diana to go over some departmental business. Bonnie said she really misses me because I’m the one who holds everything together. I don’t know how I can hold everything together when I feel like I’m coming unglued! (10/04)

My most intense fear was that I would have to give up my work. I was devastated and I cried a lot. What commitments I gave up were to my family, church and friends. Outside of work, my life was shrinking to almost nothing.

My faith commitment was very important even though my church attendance suffered. I had a strong belief that God still had work for me to do for the program that I administered at the university where I worked. On the other hand I questioned how God could let me get this sick when he was telling me he still had work he needed me to do. Every morning, as I lay in bed too exhausted to get up to take a shower, I would tell God that if he wanted me to do his work, he would have to give me the strength to do it.

It is hard to describe the craziness and irrationality I experienced during this time when I was trying to sort out how to be productive while knowing I was always going to be sick. It was as if I was looking for the impossible to do just so I could prove I could. I was looking for ways to live on the edge. Here is an illustration of this craziness.

Within that first year after being diagnosed I walked into the office of a Dean, who was a good friend of mine, for a quick chat. After a warm greeting, she asked me if I was ready to take the social work program into the adult studies model in multiple centers around the state. Without blinking, without hesitation, I said yes. This was a huge commitment to a huge amount of work at the same time that we were starting work on the social work self-study for reaccreditation. I was confident that I could accomplish all of this at the same time that I wasn’t sure that I could make it through one day. It also sounds like there was some serious denial when I wasn’t willing to acknowledge that I couldn’t do it all. Maybe I was trying to prove that I still could.

As I moved through the next few years I also experienced a lot of frustration, anger, fear and sadness. As I was bouncing between taking on too much and fearing that I wasn’t going to be able to have a life, I felt like I was always falling short of my expectations because of pain and fatigue. I forgot that I was doing three jobs and began to feel like a failure because I couldn’t do one. Here is a journal where I express some of the depths of my despair:

I am weary, discouraged and frustrated. I want to feel good so I can do what I feel called to do. It is difficult to move ahead when pain and fatigue feel like an anchor around my neck. Maybe I have been wrong for the past year. Maybe I should give in, quit, and lead a slower life. Maybe it isn’t God who wants me to do what I can do at SAU. Maybe it is my own ego and self-will. Maybe I need to be needed and it isn’t God at all. Well, I can’t quit today so I better get my hair washed and get to work. I am so frigging tired. (10/05)

There were many days when I wanted to stay home and let myself be sick. I made the decision, however, that I would go to work every day no matter how horrible I felt and then I would go home if I couldn’t handle it. Most days I found that once I got moving and interacted with people at work I would feel better and be able to work for some part of the day. As I gained some control over symptoms I was even able to work some really long 12-14 hour days, for which I paid dearly the next few days. There were a few days, however, when I stayed ten minutes and had to leave for home. I was fortunate that I had a flexible schedule and could do a lot of my work from home – or take work home with good intentions but take a four-hour nap instead.

One of the ways that I cope is to plan my activities. We have the joke, its supper time so it must be time to go to the store. Very European. But even with frequent light shopping, it can be difficult. Some days I don’t have enough energy or hurt too much to shop so we have scrambled eggs for supper. If I have an active day, supper is simple. When I worked I would cook meals on week-ends with leftovers so I wouldn’t have meal preparation after work. We also have had a weekly date night. Every day entails a cost-benefit analysis where I weigh how much energy I have and how it will be used.

Eight years later it no longer feels like planning, it is just how I live life. Doing things in the most simple way is the only way I do them. Holiday dinners consist of a buffet of easy to prepare foods instead of big, elaborate meals where everything is put on the table. At first I felt guilty but then I realized that it worked really well and everyone seemed more relaxed. If energy is low I ask all the kids and guests to bring something instead of doing all the cooking. And I get everyone involved in getting food out and clean-up. Entertaining has become fun for me again – but I also limit the amount of entertaining I do to keep it fun.

We need others to be understanding when we don’t have enough energy or don’t feel well enough to participate in activities and to be willing to make modifications to work responsibilities and routines. Even though I am quite stable now, I still need to have a lot of flexibility in my life. When people ask me if I want to do something, I have to think about what else is going on in my life and what impact it will have on the rest of my week. It took a long time to feel comfortable with this. We are going camping next week and I have to think carefully about how I can pace myself as I am packing the week prior. My husband also has to take on more of the work to make it possible for me to go.

Our work and family responsibilities need to be modified when we have a chronic illness in ways that are different then when we have an acute illness. There needs to be more flexibility and we need to continually do a cost/benefit analysis of how much we can do and where we want to spend our energy. More will be coming on this topic within the next two weeks.

Related articles

• Being Sick and the Sick Role (imissmetoo.me)