Who Volunteered Me to be Sick?

In the previous blog, Being Sick & the Sick Role, I shared Parsons’ characteristics of the sick role that included: a) others recognize that the illness is involuntary, that getting sick was not the intention of the person who is sick; b) when people are sick they are exempted from their usual work, family, civic, and other obligations; c) they are expected to not want to be sick and to do what they can to restore their health; and d) are expected to seek competent help and to cooperate in the process of trying to get well. Parson identified these characteristics to help people understand how life is expected to change for people who have acute illness. I believe that having a chronic illness leaves us in a very strange position of both needing to use the sick role, but also needing to very strongly reject it.

This blog is about how a chronic illness, especially one that is invisible, can muddy others’ perceptions of whether our illness is involuntary and our intentions. In fact, they can muddy our own perceptions. Susan Wells tells about her experience of trying to get a diagnosis when she was having frightening symptoms and none of the doctors she went to could find anything wrong. She says that she used what little energy she had left after working and taking care of her family to find out what was wrong – which included trying to make herself look sick so doctors would believe her. Fibromyalgia and some other similar chronic syndromes like Sjogrens syndrome, interstitial cystitis, chronic fatigue syndrome, lupus, and inflammatory bowel disease do not have clear markers that can be measured by clinical tests or observed through physical examination and are difficult to diagnos. Consequently these are sometimes referred to as invisible illnesses.

We know that our experience of pain and fatigue is real but upon examination nothing appears to be wrong. In fact people say that we “look so well,” which sounds like a compliment but we believe there is an underlying message of wondering if we really are sick. Doctors can see a broken leg upon examination and ex-rays. Diabetes can be identified through blood tests. No one would ever suggest that someone is choosing to have a broken leg or diabetes. And even though I chose to have my knees replaced, no one ever hinted that it was my intention to be in pain afterwards so I could get out of fixing supper or doing laundry. A friend is having her hip replaced next week and no one would suggest that her real intention is to be on work disability for eight weeks.

In our Western culture, the medical model of identifying disease through physical examination, testing for evidence, and finding a cure is the primary way of thinking about illness. Consequently, these types of illnesses where there are no markers are not always recognized as legitimate, even in the medical community. When pain and fatigue are the major symptom of an illness but there isn’t any identifiable disease, it is also sometimes ambiguous whether the illness is involuntary. A frequent lament on discussion boards is that people with Fibromyalgia and Chronic Fatigue Syndrome are accused of not really being sick. These people suffer emotional pain because important people in their lives don’t believe their symptoms are real and thus there is the implication that the symptoms are made up, all in their head, or the intention is to get out of work or to get attention.

Some doctors believe, when faced with symptoms that they can’t be measured, that the people complaining of the symptoms primarily have a mental illness. In fact, we begin to worry that we are hypochondriacs and frequently are given that labeled by others, including health care professionals. The Mayo Clinic defines hypochondria in the following way.

When you have hypochondria, you become obsessed with the idea that you have a serious or life-threatening disease that hasn’t been diagnosed yet. This causes significant anxiety that goes on for months or longer, even though there’s no clear medical evidence that you have a serious health problem. Hypochondria is also called hypochondriasis.

While having some anxiety about your health is normal, full-blown hypochondria is so consuming that it causes problems with work, relationships or other areas of your life. Severe hypochondria can be completely disabling.

This definition was obviously written by a group of doctors who had never been really sick with no explanation – maybe for years as so many of their patients experience. Yes, when we are really sick, both the symptoms and the search for answers can take over all of our life. When my symptoms were worsening by the day, I felt like I was losing my life. I attempted to go to work and take care of my family but I was consumed by anxiety about what was happening to my body and trying to find answers from doctors.

When, as a therapist,  I was working with people who were experiencing anger, sadness or anxiety, I would ask myself whether the person was having a normal reaction to an abnormal situation or an abnormal reaction to a normal situation. It made a big difference as to whether we focused on the reaction or the situation. It seems to me that having extreme anxiety when our bodies are failing and no one can give us an explanation is a normal reaction to an abnormal situation.

When doctors say that we are hypochondriacs (give us the label of hypochondria) it just could be that they are feeling frustrated or helpless or inadequate because they can’t find a reason. Just because they say “there’s no clear medical evidence that you have a serious health problem” doesn’t mean that there isn’t something wrong, it may just mean that they haven’t figured it out yet. That doctors can’t figure out what is wrong doesn’t mean that our intention is to be sick and we are making it up. When doctors can’t figure out what is wrong our normal response should be anxiety. In fact if we were making it up we wouldn’t feel any anxiety over not knowing what was wrong. There is a lot of faulty logic to this definition and its use on people who are being diagnosed with a chronic illness.

When we have been diagnosed with a chronic illness that isn’t visible or measurable and could destroy our lives, we really don’t want to be sick. I wrestled with this a lot as I talk about in this journal entry:

Yesterday I had one of those flash thoughts that told me that maybe it would be okay to be sick. My grief therapist and I have talked about not wanting to take on the sick role and I still don’t want to do that. This thought is different, however. My husband has tried to tell me I am sick but I have fought him. My doctor obviously accepts that I am sick or he wouldn’t have been able to ethically see me and bill insurance every couple of weeks. He has to write a diagnosis on the insurance billing forms and has talked about Fibromyalgia being chronic and potentially debilitating. After discussing how well I’m doing with the doctor today, I talked with him about beginning to accept that I am sick. He wrote on a piece of paper “Sick never looked so good.” (4/05)

For some reason this really helped but was also confusing. I didn’t want to be sick; I wanted to go back to leading my life fully and with gusto like I had been. I didn’t want to look sick because I wanted to pass as being well. On the other hand if I didn’t look sick or act sick, how could people understand that sometimes I needed special allowances, special privileges, needed help? And most important, when I was having a “bad body day” because of the fibromyalgia I wanted people to understand that it is not because I chose to be sick.

The next blog in this series will cover the implications of being exempted from our usual work, family, civic, and other obligations when we have a chronic illness.

Parson, T. (1951). The Social System. Toronto, Ontario: Collier-Macmillan Canada, Ltd.

Wells, S. (1998). A Delicate Balance: Living Successfully with Chronic Illness. New York: Insight Books.

Losing Control of My Life

When we get sick we need to shift our attention, and our energy, from our normal activities to getting well. I will be sharing information and my thoughts on the sick role in future posts under the category In Sickness and In Health.

In that first year I had a really hard time getting my mind around the fact that chronic meant forever, maybe because I was so afraid of what forever in pain meant for my work and play. I began to understand, but really didn’t want to know, that it meant I was never going to get well, that I would have some level pain and would need to work to maintain my energy – and I probably would never get back the life I had known. Although I had a strong desire to continue working full-time and to have a life outside of work, being sick seemed to become who I was and what I did. I had lost control of my life to sickness.

My life became weekly doctor appointments to adjust medication dosages, discuss ways to treat new symptoms, or for acupuncture for pain. Life was also consumed between appointments by doing things to get the most from my time with my doctor, like creating charts of sleep quality, or pain levels, or amount of fatigue. I was thinking about symptoms all the time which meant that pain and fatigue were controlling my life. Don’t misread me – I’m not criticizing what I was doing. This is what I needed to do and because of it I was slowly getting better. I wasn’t getting the life I had known back – but I was getting control of symptoms and I was hanging onto a sort-of life.

For a long time I fought hard to get my old life back by doing everything right but the progress was usually so slow that I wasn’t able to see it. Maybe I couldn’t see it because I was looking for evidence of my old life and wasn’t willing to recognize anything different. Sometimes I just got tired of fighting and then I would rebel. You have heard of the fight or flight response when we are in danger? Well I saw losing my life and my sense of self as a huge danger and it didn’t seem like fighting for health was working. My rebellion would involve something like a “flight away” from it.

In my anger, I backed off from what I had been doing. I tried to pretend that I wasn’t experiencing pain and fatigue. I tried to pretend that pain wasn’t controlling my life. I tried to tell myself that most of the time the pain wasn’t strong enough to make a difference in my life, but it was always there. I tried to convince myself that the pain didn’t keep me from doing the things I wanted to do, but the pain did interfere because it tired me quickly. And I discovered that pain was controlling my life, even if I didn’t want it to or told myself that it wasn’t. The pain was an ever present part of my life, even if it wasn’t intense or always in the same place. And the pain was so unpredictable. I continued to live with the frustration that there didn’t seem to be much I could do to make it better or know what made it worse.

These funks when I would try to flee from having FM didn’t last long – probably because they were less productive than facing the illness head-on. After stomping my feet and having my temper tantrums I would settle down to figuring out what I needed to do to control my symptoms and continue to focus on living my life. And believe me, being sick never was at the top of my fun-in-life list – but it was there because that is what having a chronic illness means.

We can have control of our lives and maybe sometimes even control some of our symptoms of our chronic illness. I just had to figure out how.

Have you struggled with feeling you no longer have control of your life? Please comment.

Copyright © Patricia A. Bailey and I Miss Me, Too/imissmetoo.me 2012-2013.

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