In Sickness & In Health

Still Facing Change

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Sculpture at Hidden Lake Garden, Michigan

I must be going through another period of change brought about by growing older and the challenges that entails. I’ve been going back and rereading some of my early post, back in 2012, when I was a new blogger and using my posts to share my struggles in learning to live with fibromyalgia. Writing was an exercise in healing and sharing my struggle with an invisible audience seemed to help. Or maybe I was hoping to connect with others and my journey of healing, that was then 8 years along an “unto death do we heal” path, would give hope to others.

Most of my blogging has involved sharing photography and travels, and sharing my two neighborhoods, one in Michigan and one in Florida (USA). I have met some wonderful people through my blogging, and many of them have had to face unwanted changes in their lives and it has been a pleasure to hear their stories and to share our mutual understanding. It seems that sharing personal stories that are honest and without pretense brings us closer together. Sharing our struggles without self-pity draws others in because most people have an innate desire to help, if only to carry the yoke of emotional burden with us for a while.

It feels right to re-post this that I wrote in June, 2012:

FACING CHANGE – MAINTAINING INTEGRITY

My doctor introduced me to the term “new normal” and it intrigued me – probably because I was well on my journey to finding one. And it was a hard journey, as bumpy and wild as the five-day tour of Kyrgyzstan in a 4-wheel drive van driven by a guide who had fantasies of being a bronco rider – more about that in different posts. The journey to a new normal was full of doubt, fear, pain, sadness, and anger and it required a major change (not just a shift) in how I thought about myself and my life. It took courage and perseverance; sometimes I wanted to give up but I didn’t know how. Even though I became discouraged at times, I always had a strong drive to find a way of living that had integrity. But what does a new normal consist of?

I wrote this in my journal in October 2004, ten months after being diagnosed.

For many years I have found strength and direction in the following words by James Baldwin (1961, Nobody Knows my Name, p.100):

 Any real change implies the breakup of the world as one has always known it, the loss of all that gave one an identity, the end of safety. And at such a moment, unable to see and not daring to imagine what the future will now bring forth, one clings to what one knew, or thought one knew; to what one possessed or dreamed that one possessed. Yet it is only when a [person] is able, without bitterness or self-pity, to surrender a dream he has long cherished or a privilege he has long possessed that he is set free – he has set himself free – for higher dreams, for greater privileges.

I need to reflect on what this means for the changes I am experiencing. There are days when I feel like my world is breaking up, I sometimes don’t know who I am anymore and whether there is enough of me left; I’ve lost the safety of knowing who I am and what my body can do. And I am really afraid of what my future will be like.

Thinking about what it means to give up my dreams and privileges will have to wait for another day, when I can muster enough courage. It has been many years since I’ve felt this much emotional pain. I had forgotten the feeling of crying from so deep that it feels like a fist in my stomach.

 Seven months later I reflected on what I had written above in the following journal:

During the past 7 months, as I had to face a very uncertain future, I tried to cling to what I had been and especially what I thought I wanted to be. I fought to hang onto my dreams and hard earned privileges. James Baldwin wrote to the privileged whites who he is asking to give up their personal dreams and social privileges for a more just world. I would have to rewrite the last sentence in order to communicate the journey I am taking:

 Yet it is only when I am able, without bitterness or self-pity, to surrender my old life – and be willing to live the life I have been given – that I am able to have a fuller life.

 I think I am mostly there, sometimes more gracefully than other times. Most days I feel a peace that comes from knowing God will use me in ways I can’t even imagine. I feel a peace that comes from knowing God will give me what I need when I need it. I’m not quite as graceful when, after I have done things that I didn’t think I was capable of, when I have pushed myself to my physical limit, I experience days of pain and fatigue. I guess I didn’t think that was a part of my covenant with God, but then he never promised life would be easy. He just promised to love me and be with me.

When I wrote the previous paragraph I believed that I was “mostly there.” I had done a lot of grieving, had felt a lot of sadness, fear, emotional pain, frustration, and anger. But I still had a long way to go because developing a chronic illness like fibromyalgia impacted on all aspects of my life and adjusting was a process that took years. At times I felt like I was taking too long but adjusting to a chronic illness is neither easy nor quick.

I was in my late 50’s when I was got sick so I also had to deal with the physical and life changes that took place as I was aging along with the changes imposed by fibromyalgia. I have been thinking about people who develop chronic illnesses in other stages of the life cycle and know that each life stage has its challenges and tasks and adjusting to a chronic illness makes accomplishing the task even more challenging. The bottom line is that no matter how old we are, being diagnosed with a chronic illness is devastating and disrupts our goals and dreams.

Here is what I wrote seven and a half years after being diagnosed explaining how I knew I had found my new normal:

I have made two interesting discoveries that have confirmed for me that I have settled into a “new normal.” One is a quote from an article that I discovered while doing a literature search for my writing. The literature review includes the work of Nola Pender[i] who proposed that levels of health exist along a continuum and interact with the experience of illness. And here is the interesting part for me: “Whatever the illness experience, the individual continues on a quest for health – a developmental process… Through this developmental process, it is possible for a subjective state of good health to emerge in the presence of overt illness or disability.”

Boy this makes a lot of sense to me when learning to live with a chronic illness. The authors have put into words what I have experienced. Even though I am very aware (when I think about it) that I have fibromyalgia because symptoms don’t ever seem to totally go away, I still am experiencing a subjective state of good health. How cool is that!

The second discovery is that my life no longer centers on fibromyalgia. Instead, I am living my life fully with some limitations due to fibromyalgia. Most of the time when I am active and doing things I love, I don’t even think about having fibro. It has become one small piece of my identity and how I live my life.

My doctor helped me understand that a new normal is not a destination that we arrive at but a new way of being right now. It is being who we are right now as we move through our life-cycle phases. It is a way of thriving as we are continually adjusting to the demands placed upon us by having a chronic illness. This means that I will face future challenges as my life circumstances change and I will have to continue to work on what it means to thrive, to live my life and be who I have been called to be.

What is encouraging to me is that I once again feel like I am in tune with my normal life cycle. I can once again take an active role in making decisions about who I am as I age and how I want to live my life, as some options are lost and new opportunities become available. Fibromyalgia will always be a factor in the decisions I make but I don’t feel like my chronic illness is in control of my life. My life has integrity.

[i] Pender, N. J., Murdaugh, C. L., & Parsons, M. A. (2002). Health Promotion in Nursing Practice. Upper Saddle River, NJ: Prentice Hall.

 

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

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Traveling with Fibromyalgia

/ Pat / 4 Comments

I’ve been thinking about fibromyalgia the past few days. Usually I don’t, because I’m occupied with other things. But once again I am feeling the need to do some emotional work. It has been an ongoing task, dealing with the emotions that are triggered by having this chronic condition. I’m feeling good and have been able to be active, but every time I say those words I feel I need to qualify them. I’m feeling good for me and being as active as my body allows – which makes me happy.

I think I need to cry a little because…   well, because our trip to Eastern Canada was so successful and so much fun. After we were on the road, Jim told me he had been afraid to take this trip with me. In fact he thanked me for dragging him along. It was the first long camping trip we’ve taken since I was diagnosed and he didn’t think I would be able to do it. During supper tonight he once again told me he was glad that I did so well on the trip because he had been afraid to go. I hadn’t allow myself to recognize my anxiety before we left but I now know that I was pretty stressed. I guess I live in a constant limbo between fear and desire.

In the weeks leading up to the trip I wanted to believe I could do it because I had gone to St. Petersburg, Russia in the first year after diagnosis and to Kyrgyzstan three years ago. But those were different. I didn’t have to do any work on those trips; work like setting up the camper and taking it down. I didn’t have to ride in a truck every day for over three weeks. Those trips were only two weeks long and this was going to be three weeks or longer. And I didn’t have my old doctor to help me prepare physically for the trip although I did get my new doctor’s help. But I had to tell him what I needed because he doesn’t know me yet, and because he hasn’t been following me through my getting better years. He couldn’t suggest things to do – like my old doctor did. I’ve been angry at my old doctor again but I’ll get over that.

I’ve been thinking about what I did to make the trip successful. It seems like everything I used to do now takes more planning and more care. I like being spontaneous but being too spontaneous with fibromyalgia can mean falling on my rear for a day or a few. Here are some of the things that made our trip work.

I increased one of my meds from 200 mg daily to 250 mg. I have some side effects that I don’t like at the higher dosage but it also results in decreased pain. I asked, and my doctor wrote a prescription for two months because I knew I didn’t want to take it any longer than needed. I started it about three weeks before we left and stopped a few days after we returned. I take two medications specifically for FM and I could trust my old doctor to know how each one worked in my body and to suggest the one to increase or decrease as my life fluctuated. I miss that but I have been paying more attention to how my body reacts and it is probably good that I am now taking more responsibility for this. I also increased my use of OTC pain relievers while we were traveling.

Gas Station Flowers

I paced my activities. We share driving and I like the change of pace that driving provides. I let Jim know when I couldn’t drive and I offered to drive during my best times of day. I also requested frequent stops and when we stopped I did a little walking. I have found that walking just 10 minutes a day decreases pain. When we stopped for gas I got out of the car and frequently used this time to wonder off a ways to take a photo or ten.

We ate well. We eat out of our frig for most meals when we travel with the trailer. I find that I do better if I have small meals, with a balance of protein and complex carbs, and low fat. What I eat makes a difference in how I feel but I haven’t wanted to complicate my life with complex diets. Cooking our simple meals worked better than the crap shoot of eating in restaurants (my husband’s words).

The only “special food” I use is whey protein powder. We ate cereal for breakfast because it was fast and easy before we closed up to move to another area. Wild blueberries were in season and I would sprinkle some of the vanilla flavored whey protein on my cereal and blueberries before I added milk. Sometimes I mixed it with milk to drink if a needed an energy boost. It is marketed for muscle regeneration after exercise.

Lunch was our favorite meal because we stopped along the road for easy to eat, nutritious foods out of the frig. We could always find a place to pull over – even in church parking lots that gave me an opportunity to also take pictures of architecture.  Supper was also almost always eaten at our campsite. I had taken some frozen soup in zip-lock bags and we purchased food along the way. Planning our suppers together and shopping for food was a part of the fun. And of course if we discovered a fun opportunity to eat out we took advantage of it.

We took rest days. After the first four days of travel, I told Jim that I needed to take a rest day which meant that we stayed in the same campground for two nights. That day was spent blogging, reading and napping.

View outside my window – Cape Breton Island. Rest!

The first time I asked for this I felt guilty, but it turned out that Jim needed and enjoyed it and this became a part of our routine. I took responsibility for letting him know when I needed it, however. I have learned how much physical exertion my body will tolerate and how stress impacts on my functioning so I could factor those things into the equation of when we moved and when we stayed put. We did some sightseeing on our rest days (or laundry) but not having to take down and set back up reduced my work load and thus muscle pain and fatigue.

We travel light. We didn’t take any more than we absolutely needed to be comfortable. Everything extra that we take and use when camping requires more work. If we questioned whether we should take it we left it home. We also planned ahead and did our food shopping before we stopped for the night so frequently we didn’t have to unhook the truck. That meant that Jim could pick up some of the physical work that I normally did because his work load was lighter. We have learned to travel smart when pulling the trailer.

The other side of traveling light is that I took those things that help with pain and fatigue. Getting a good night’s sleep is the number one most important thing I do to feel good so we sleep in separate beds. I took a memory foam topper for my bed, we took down comforters to keep us warm at night, and I used my c-pap machine every night. My exception to traveling light was that I took more clothing than we actually used because I wanted to be sure I would be warm enough if the weather was cold. I had silk long johns, gloves, ear muffs, a scarf and lots of layers of clothing. If I get cold, I hurt. Of course we also needed warm-weather clothes because when I get too hot I experience fatigue.

Plan ahead to avoid problems and stay flexible to deal with problems. One of the things I really enjoyed about this trip is that we had a general plan of where we wanted to go but we also knew we had the time to be flexible. In fact the parts that were the most enjoyable were those where we didn’t have to be someplace at some specific time – we could move at our speed. Having to monitor how fast we went or how slow we were going created stress for me. We only had a week on Newfoundland because of the ferry reservation and we soon figured out it wasn’t enough time. We realized that three weeks wasn’t enough time for everything we would have like to do. Maybe there never is enough time. I dealt with this by decided we would go again next year, in September to see the color, and start with New York, New Hampshire, Vermont & Maine. Spend some time on the Bay of Fundy, and maybe, just maybe get as far as Newfoundland again. We’ll see.

The one major problem we faced was not being able to get on the ferry to Newfoundland when we wanted to – we had to wait 5 days. We should have made a reservation but we had no idea how long it would take us to get to Nova Scotia via the Gaspe Penninsula. And part of me didn’t want to think about time and schedules and commitments. Jim was ready to scratch that part of the trip but we sat down and talked about it for a couple of minutes – well, I talked. The whole purpose of the trip was to go to Newfoundland and I wasn’t going home without that experience. We bought the tickets. We flexed our plans and some of my favorite photos and stories came out of this change.

When things get tough, we stayed in a hotel. The hardest part of the trip was the last two days traveling home. I knew they would be and I was feeling anxiety about finding a campsite along the interstate in New York or Pennsylvania. We made the decision to stay in a motel so we could drive longer and not have the added fatigue from having the work of camping. At the beginning of the trip, we decided we would use a hotel if we got into hard rain in early evening when we were ready to stop. Reducing stress results in reduced pain and fatigue.

Sunset on the Ferry – Nova Scotia to Newfoundland

The Sick Role: Restoring Our Health

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network of diseases

network of diseases (Photo credit: DrJohnBullas)

In a 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.[i]

These characteristics were identified to describe how life is expected to change for people who develop an acute illness and 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 strongly reject it. In this post I provide my perspective on the aspects of the sick role that involve not wanting to be sick, needing the help of others and working with the medical community to restore our health.

The first, not wanting to be sick, seems self-evident to anyone who doesn’t feel well for whatever reason. I have to admit, in my BS days (Before Sickness), there could have been a few days when I wished I was sick so I didn’t have to go to work, or exaggerated a cold so I could stay home. But I don’t want to be sick to the point that I have to give up being productive. I don’t want to play hooky from life. Especially not forever.

Our culture values independence over dependency (especially for men) and achievement through work, especially paid work. But even in family relationships it is expected that everyone will pull their own weight based on age and ability. When we become sick, the sick role allows us to become dependent on others and exempt from work and social responsibilities for the duration of the sickness without being judged – but we do have the obligation to work towards getting well and returning to prior responsibilities (Kassebaum & Baumann, 1965).[ii]

Physician treating a patient. Red-figure Attic...

Physician treating a patient. Red-figure Attic aryballos, ca. 480–470 BC. (Photo credit: Wikipedia)

The sick role has the expectation that we will seek medical help so we can be treated, get well and return to our normal routines. This is where a chronic illness is much different than an acute illness. I had always gone to a doctor expecting to receive a cure or assurance that I would get better if I just rode it out. With a diagnosis that means chronic, I wrestled with what it meant to be dependent on medical help in a new way:

I don’t know how to deal with the symptoms without my doctor but also fear becoming dependent. I know this is irrational because when I feel good, I have no desire to sit in a doctor’s office. I think I can trust myself to know how to let my doctor help me while I learn how to manage my symptoms on my own. I also keep telling myself that I have a very large group of friends who love me as a “well person” but also acknowledge what I am experiencing. I spend time with them doing fun things and getting my needs met so I don’t have to depend on being sick to get attention.

I was also wrestling with whether my constant need for my doctor’s help was turning into a need to be sick. I had never been a big fan of doctors and had only needed to see one a couple of times a year at most but when I was in so much pain and was so fatigued, having a doctor help me, take care of me, felt very good. I had to keep reminding myself that I didn’t want to be sick, but I did need help in finding treatments that would help me regain my functioning. If you are reading this I can believe that you don’t want to be sick either.

The biggest challenge for me has been to figure out how to be functional with a body that is dysfunctional. How could I be sick forever and have a normal life? That was a hard sentence to write because it means that I will never be able to assume my prior responsibilities. I needed to figure out, and continue to re-figure, how to live with greater dependency, how to be content with new goals for achievement and work, and how to be content with a different level of involvement in the activity of family.

This is why I believe that the concept of “striving for wellness” at the same time as we are coping with the symptoms of chronic illness is very helpful. Here is how I described this sense of wellness in my journal a little over a year ago:

Nola Pender[iii] proposed that levels of health exist along a continuum and interact with the experience of illness. And here is the interesting part for me: “Whatever the illness experience, the individual continues on a quest for health – a developmental process… Through this developmental process, it is possible for a subjective state of good health to emerge in the presence of overt illness or disability.” Boy this makes a lot of sense to me when learning to live with a chronic illness. The authors have put into words what I have experienced. Even though I am very aware (when I think about it) that I have fibromyalgia because symptoms don’t ever seem to totally go away, I still am experiencing a subjective state of good health. How cool is that!

This sense of wellness didn’t come quickly or easily – and I didn’t always do it gracefully. I fought and I grieved and I fought some more because I refused to be sick and I didn’t want to admit that I had to give up pieces of my life. Eight years later I know my body doesn’t work right (I’m sick?) and I’ve made a lot of changes – I’ve settled into a new normal that feels like a sense of wellness. The new doctor I’m seeing has as the first question on his intake form, “Are you in good health?” I circled yes.

In future posts I’ll share how my life is different but fulfilling – and try to explain how it happened.

I would love to hear your thoughts on how you have found a sense of wellness, or wholeness, while coping with a chronic illness or chronic pain. Or maybe for you it just doesn’t seem possible – I would like to hear about that too.

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

[ii] Kassebaum, G. G., & Baumann, B. O. (1965). Dimensions of the Sick Role in Chronic Illness. Journal of Health and Human Behavior, 16-27.

[iii] Pender, N. J., Murdaugh, C. L., & Parsons, M. A. (2002). Health Promotion in Nursing Practice. Upper Saddle River, NJ: Prentice Hall.

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Work & the Sick Role

/ Pat / 3 Comments

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.

27/365: fractured reality/grace under pain

27/365: fractured reality/grace under pain (Photo credit: kira.belle)

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. Continue reading →

Who Volunteered Me to be Sick?

/ Pat / 3 Comments

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.

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