browser life

Last week, I found out through the Facebook grapevine that another person with fibromyalgia had committed suicide. While I didn't know her personally and so did not know of her situation in great detail, it did give me pause. Some people with chronic illness suffer a great deal more than others may realize; sometimes this is because they suffer in silence, and sometimes no matter how much we try to help, they feel they are quite beyond hope.

With this still fresh in my mind, I stumbled across a lengthy e-mail I had written 2003 in response to a friend's request for my input on the subject of chronic illness and self-esteem. He was compiling a web page featuring various viewpoints. While the site is no longer active (it was on the same network as my now-defunct fibromyalgia site), I hope the following might still be of interest even though it is out of context. Some aspects of my situation have changed since it was written (for instance, I was forced to quit working in 2005), but my basic feelings on the subject are still valid:


"I am fortunate in an odd sort of way that I dealt with my self-esteem issues when I was still physically healthy. I had severe clinical depression beginning when I was 13 years old...I was institutionalized for it when I was 18 following my first suicide attempt. It was not a ploy for attention. I had thought intensely about my life and my imagined future and decided I did not want to live to see that future. This was no one's fault...my parents, teachers, church leaders, etc. did not do anything to make me think that way. It was a form of tunnel vision that made perfect sense to me at the time. Yes, it was a cold way of thinking, but no one knew there was anything amiss, not even me. I figured everyone thought so absolutely about life and death and their control over it.

"The time I spent in the mental hospital was actually quite valuable to me. I did not trust the shrinks and told them what they wanted to hear so I could get out eventually, but learned a great deal from the other patients. People there could talk quite honestly about the most basic issues without fear of what the world at large thought. I learned that the most basic question is not what is the meaning of life but rather what makes you want to live. And if you did not want to live, at least know why. I discovered that I did not think I deserved to live. I also discovered that it was actually okay to not be in control of absolutely every emotion and was allowed to be out of control until it felt safe to just be myself. It took years, but eventually I decided I liked what that self was. How many people get that opportunity?

"So I guess I already had an advantage mentally when I became chronically ill physically. This is not to say that I did not suffer emotionally. I just did not suffer endlessly or to the extent of someone who has never had such mental challenges. I already knew what sanity felt like and what insanity felt like, so I knew the warning signs of depression and the pitfalls. Ironically, I was seeking counseling for dealing with the impending death of my mother when I was referred to the wrong sort of doctor. This man only prescribed pills and coerced me into taking an SSRI, assuring me it was perfectly safe despite my protests. I had a violent physical reaction to the med which was dismissed as an anxiety attack. Part of the physical reaction was permanent insomnia and muscle spasms, two very important contributors to fibromyalgia. In studies where people are deprived of sleep for more than a few days, the subjects develop fibromyalgia-type symptoms. This is what happened to me.

"I think the first challenge to one's self-esteem when one develops chronic illness as the result of a trauma is the not being believed. For the first time, I was going to doctors for physical complaints that were not being taken seriously. I was told I was depressed or stressed and needed more of the SSRI that was making me so sick. While in my heart I knew this was untrue and that I was quite sane, having experienced times in my life when that had not been the case, these were medical professionals all telling me the same thing, and weren't they supposed to know more than I? Eventually, this onslaught does erode even the most confident of souls, and doubt begins to color the thought. So one begins to wonder if they are somehow thinking themselves sick and begins to feel guilt over not being able to think themselves well. One begins to accept very distressing symptoms as being imaginary and becomes angry that they can't tune them out. One starts seeing themselves as a wimp, aggravatingly flawed and spiritually weak. When enough doctors tell a chronically ill person that there is nothing wrong with them, naturally the family members start to wonder too. In an attempt to help, the family members tell the ill person to pray harder or think more positively or to shake it off and get over it. This exacerbates the ill person's self-doubt, and unintentionally exacerbates the illness. Some people are never able to escape this vicious cycle, especially if they never receive a proper diagnosis.

"But I never was able to completely accept this dismissal from the medical community as being valid, even when I tried my hardest to ignore my body's pain and fatigue and distress. When my neurologist sent me to a shrink to validate her opinion that I was mentally ill, I went to the shrink and told him matter-of-factly that while I did not know why I was sick, I simply was not creative enough to invent such a complicated ailment. After a one-hour examination, he agreed and said I was indeed quite sane. This improved my confidence a great deal, but of course did not solve the mystery.

"That is the second challenge to the chronically ill person's self-esteem, the pre-diagnosis period. Even if it is finally acknowledged that the person does have a physical ailment, the having no name, treatment or prognosis for it instills a deep feeling of helplessness and hopelessness in the one who is ill. Random thoughts of rare or fatal ailments are harder to dismiss. Time seems to stop. When we are told to get on with our lives, we want to scream that we can't! How can we make plans if we might be dying? How do we confidently do anything if we don't know if we are making ourselves better or worse by doing it? This is especially troublesome with fibromyalgia, because pain normally is a signal to stop doing what we are doing. We make the natural mistake of doing less, thinking we will hurt less. Eventually we become de-conditioned and hurt even more and we're left to wonder what we did wrong. We begin to feel like a failure as we do less and less and hurt more and more and still have no idea why.

"I was finally received the first diagnosis, that of fibromyalgia (I had other ailments in addition to that but didn't know until recently), three years into being ill. It is a very bizarre feeling to be happy that you have an illness, but that is what happens. It is much more of a relief to have a name for it than just some vague acknowledgment that you might be ill. Now you can start the process of treatment, research and support. The next snag occurs when some or all of your doctors inform you that fibromyalgia is not real, which throws you right back into that "you aren't really sick" mode. I think I went through 11 primary care doctors before I found one who didn't either blame everything on fibromyalgia, tell me I was just depressed or just throw pills at it to get me to shut up. It is quite difficult to reassure oneself that they are worthy of the search for compatible medical care.

"Other challenges to self-esteem occur when the illness becomes bad enough to force lifestyle modification. Americans in particular like to have careers rather than jobs and actually identify themselves with what they do for a living. So instead of saying they do accounting work, they say they ARE an accountant. So when you cannot work due to illness, does that mean that suddenly you are nothing? Some would think so. I was lucky enough to have a mother who always told me that you are not your job, that what you do for a living is just a way to make money and that what you enjoy in life may not always be what you do for 40 hours a week. She was a loan officer at a credit union who was an artist in her free time. So most of the time when I do less quality work at my job than I am accustomed to, I try not to let it diminish my opinion of me as a person. And if I must stop working, I am not a failure on a personal level. This is not to say that I don't feel tugs of guilt at no longer being my best. I am human, and it hurts to not be able to rely on your ability to do error-free work. But I do try to divert my attention to other ways I can be a "success" as a human being.

"This must be particularly difficult for people in careers that save lives or directly improve someone else's life. The next challenge to our self-esteem is coming up with ways of helping others that do not demand as much of us physically. I try to communicate in writing and to provide information to those who need it and support to those who are having trouble dealing with their chronic illness. Feeling useful is a big thing to me....it wasn't until after my mother died, but I figure better late than never. And the things that used to make me feel useful, like keeping the house clean or physical volunteer work have been replaced with words on a page. I am comfortable with that. That is not the answer for everyone....there is much soul-searching involved in deciding what constitutes being productive for you. Everyone wants to be needed. I contribute to a fibromyalgia message board....that may not sound like much, but one day someone I had never met told me that they read everything I post and need to see how others cope and that I was a big help with that. So when people in my daily life tell me that I perpetuate my own illness by focusing on it too much, I know in my heart that they are wrong.

"Perhaps the biggest hurdle for the chronically ill person to overcome is the question of why them and why not someone else instead, or even better, why does anyone have to have this sickness? As a former atheist, I used to think rather concretely on the concept of deserved-ness. The concept that one could be sick and it not be a punishment for a screw-up somewhere didn't fit with my thinking. The idea that sometimes illness just is no matter what sort of lifestyle you've lead was overwhelming at first. Oddly enough, I had even more problems with the concept after I began to believe in a higher power again....it was difficult to imagine a creator that would allow sickness, death and other mayhem in people that had done nothing to deserve it. So of course at first, I searched my soul to figure out just what it was I had done wrong. I found flaws because every human has flaws, but nothing that said, aha, here is where you screwed up. Then one day in a bible study group we discussed Job, and the light bulb flickered on, so to speak. It is less important why I am sick than how I choose to react to what I am given to work with. There probably IS a reason I was given this illness, and it may indeed be a very good one. I am forced again to go back to the basics of life such as why I want to live and what I want to do with that life when it has limitations. Maybe the lessons I have learned are ones I can share....I am by nature a very selfish person, so I do need to learn how to share. There are others that I am working on...this is a work in progress with the finished product not determined until the day we die, which will be a very long time from now if I can help it.

"So how many other people are this self aware who are healthy? There are some, but I'd venture to say there are fewer of them than those who are challenged as we are. One thing we can do is share this awareness with those who have never considered the notion that they are not their job, or their major in college, or simply an extension of a spouse or kids."