A sample chapter from Beyond the Mailbox
Commonly, there is little recognition of the struggles those with chronic illnesses encounter daily. For me it may be because to a certain extent I hid the depth my symptoms. I felt I needed to keep up the appearance of wellness in family relationships and with employers and coworkers as well. If my employers knew how poorly I felt and how much I struggled to think, process, show up at work, and be cheerful when I felt miserable, I’m sure I would have lost my job. Eventually, I did.
My life with chronic illness is often accompanied by bitterness and anger. A portion of those feelings are directed toward the health care system that has been unable to find out what’s wrong with my body and affect a cure. I say this knowing full well that, as I discussed previously, we know very little about how the body works and especially about the connections between mind, body, and spirit.
The bitterness also stems from a lack of compassion towards me and, by extension, all those who are chronically ill. I realize it’s impossible for those who have relatively healthy bodies or who are experiencing the normal aches and pains and diminishments of aging to understand what life is like for those who have been living with chronic illness for most of their lives but often there is little effort to understand.
Bitterness and anger also stem from having been deprived, in the prime of my life, of the life I expected and hoped to live. All my energy went into earning a living and maintaining my independence. There was no energy left for fun.
I don’t want pity. Pity seems to have an air of contempt; feeling sorry for someone from the perspective that if the person was just stronger or had more gumption that person would just get over whatever it is that has a hold on the person and get on with life. I want to be treated with compassion. Compassion accompanies a person with a desire to spare the person from suffering. It is a willingness to be with the suffering person, not as one who understands (for who can truly understand what another is experiencing) but simply as a companion, as one who cares.
People seem to find it easy to be compassionate toward someone who is ill or suffering if that situation has a clear ending. We can feel for and do our best to assist a person who has the flu or a hip replacement, knowing that our services – be that chicken soup or a trip to physical therapy – are temporary. But if the situation is chronic then compassion fatigue sets in. That leaves those with chronic illness at the whim of others’ time and kindness.
When I was teaching at a physician assistant program the program director was aware that my health was less than stellar, yet one day when I came to work feeling very tired but ready to teach my class she declared “your illness is not my problem”. As true as that statement was (after all, she was not responsible for my being ill) her statement seemed to lack any understanding, compassion, or willingness to hear how difficult it was for a person to work with less than a full tank of energy. Somehow, I was expected to leave my fatigue at home. Then again, my illness in some way was her problem in that if one of us is hurting we are all hurting. If one of us is sick, we are all sick. And until all of us are well, none of us is completely well.
I found a similar attitude when working in a parish setting. When the pastor hired me I was honest with him about my chronic condition yet somehow I was also expected not to be ill or at least not to have illness ever interfere with my work.
At a nursing home where I was employed as a chaplain, I was labeled as “unreliable” because my symptoms flared on the day a special event was scheduled and I was unable to work. I had a small role assigned to me for that event that was easily covered by another staff member, yet I was “unreliable” from that day onward.
Am I unreliable? Now I am, for sure. One of the hallmarks of this mystery illness is “non-restorative sleep” which means that no matter how much sleep I get I never feel refreshed. It’s as if I haven’t slept at all. I feel as tired (and as grumpy) when I awaken as I did when I went to bed. Additionally, I have the typical “brain fog” that sometimes makes simple tasks such as driving ten minutes down familiar roads into an experience akin to driving with sunglasses on at night and in reverse gear. So, yes, I sometimes cancel appointments at the last minute because I need to go back to bed. And, yes, I cancel a lunch date at the last minute because I realized as I was leaving the driveway that I wasn’t able to attend to all the sensory input driving requires and my reaction time was nil. Unreliable, yes. Intentionally, no.
Perhaps it has to do with our attitude in this culture toward those who are in less than perfect health. It’s as if we are contagious – stay away, it might be catching. The unhealthy are looked upon as stupid – how could you let this happen to yourself – the same way we may look at obese people, like me now, and wonder how they could let themselves become so fat. Clearly these happen because the person is lazy.
Our culture equates what you do for work with who you are. Productive people are valued. If you are not working or are on disability or receive public assistance or food stamps it must be because you are lazy. That seems to be the default reaction when in reality there are many reasons why a person may not be able to secure, or keep, gainful employment or have enough money to pay the bills.
In the midst of not working, it is difficult to maintain a sense of dignity and a sense of identity. I suspect everyone wants to work, to be useful, to contribute to the betterment of society. This makes us feel good about ourselves. Working gives us the opportunity to support ourselves, to provide for our needs and the needs of those dependent on us. When work is taken away, especially when that taking away is out of one’s control, it takes a toll on one’s self-image.
We who carry chronic illness with us as others carry their American Express card (we don’t leave home without it!) are not this way intentionally. We simply want to be loved, despite of our frailties. We want to be treated with dignity. Underneath the fatigue, the occasional irritability because we’re running on empty all the time, the need to take extra time to rest, the need to reduce sensory stimulation, is a desire to be respected for our abilities, not denigrated for our disabilities.
What I have experienced as a lack of compassion from various people in a variety of settings I could also term abandonment. Others might call it cruelty, meanness, or intolerance and certainly there is an element of all of these. I suspect that anyone who has a chronic illness that interferes with the ordinary tasks of life has also experienced abandonment. I have been abandoned and have abandoned others. It’s a simple fact that some people don’t have the time or desire to befriend a person who cannot hold up the other end of the friendship. Likely they would have abandoned me anyway, perhaps when I moved or disagreed with them on a topic dear to their heart. Some I suspect leave the relationship out of fear. It can be scary to be around someone who is not well. It is a reminder that sooner or later their body will fail, too. Others tire of being stood-up and misinterpret cancellation of plans as an indication that I no longer want their friendship when the truth is that I cannot function on that particular day.
I have abandoned people who have high energy levels and those who are what I would term “high maintenance”. The truth is that I just can’t tolerate what I refer to as “sensory overload” – lots of movement, noise, talking, certain decibel levels, being in a crowd, and I don’t have the energy to give to people who need constant validation or attention. It may be cruel but sooner or later it comes to a matter of self-preservation. So, a person learns who is healthy to be around and who is not. The difficulty for relationships is that all this can change from day to day or even from hour to hour. It is difficult enough for the ill person to adjust to these vagaries; asking others to do so is sometimes beyond their capabilities. I realize that just as sometimes I simply can’t have a certain person in my life, the shoe also fits on the other foot. I can be too heavy a load for others to handle.
Those who have stayed with me through the years are precious people capable of seeing beyond the illness to the person underneath. Perhaps they see with the eyes of God.