As strange as it may sound, approaching my 23rd anniversary of being a sick person (I remember it well – the food poisoning, giardia or whatever it was that triggered the whole thing and led to me spending most of my 24th birthday puking), I think one of my best coping strategies has been not to think of myself as sick. Even with all my writing about Sjogren’s syndrome and depression and advocating for people who suffer from these debilitating conditions, sometimes to identify with them is to fold under the weight of a lifetime condition with no cure. I forever hold out hope that one day I will get an answer to this complex puzzle, and I will be able to find the right combination of wisdom, lifestyle changes and medicines (alternative or otherwise) to sort my life out.
Furthermore, I have always clung to the idea of myself as a good and compassionate person. I don’t know why I needed to identify as such, but perhaps it was that so many people seemed out to prove me otherwise, if only to feel better about themselves. It may even be a part of my innate temperament: the INFP personality type seems obsessed with good and evil. I once read an excellent article about this very topic, and felt reassured that at least those other INFPs felt the same way as I did!
Then life happens. Considering the many stresses that have piled up over the last few years, I think a part of myself was shored up against total collapse. A few weeks ago, the dam walls burst.
Consumed with taking care of our daughter, then the illness of my wife’s mother, I forgot to take care of myself and perhaps I had shut down and become inured against life itself. I was totally blindsided as yet more obligations arose on top of the considerable debt we already carry. In the past, I had worked as my health allowed me, and in that way, felt I had a measure of control over functioning in my world. Although I have now come to some kind of truce, if not peace, with the weight of these financial commitments, at the time, something in me broke.
I have always been reserved with my emotions, much like my father, and in the past few weeks (Sjogren’s aside) I have cried more than I can remember. Music, images, phrases: the slightest thing seems to set off a torrent of unexpressed emotion from those past 23 years of illness and being misunderstood and being unable to lead a normal life.
Only a day ago, my mother-in-law passed away on the very anniversary of my father’s going, 18 years ago. I find grief that I long thought resolved washing over me again. This crying and feeling is exhausting.
Today, I read one of my favourite blogs. In recent weeks she recounted an amazing story of wrong diagnoses, identification of the right treatment, and moving forward on a hopeful, albeit difficult path. She talked about revelations about key people in her past, and the healing of broken relationships because someone in her life was willing to look at the past, talk about it, and recognize that sometimes people are sick, and that sometimes they are misunderstood because they never get the right treatment for their illness. It hurts the part of me that seeks to be a compassionate, loving being that as I read it, I felt envious: jealous that she had found the right diagnosis, the right treatment, the right answers to how things got so off track in those early years of life. Her problems are not fixed or resolved by any stretch, but as I read, I felt the full burden of my own history.
I suppose it was then I realized that I feel I am still at the mercy of Sjogren’s syndrome, depression, and whatever else is going on with me. I don’t have the answers, the treatments, the closure to all the things that have hurt so much in life, much less the hurt I may have caused others. The Buddhist teachings I read tell me that I must be the first subject of my compassion. That identifying with being a sick person doesn’t mean I am a bad person, nor good. I just am.
It therefore doesn’t help that the American Psychiatric Association (APA), in reviewing the latest edition of its Diagnostic and Statistical Manual of Mental Disorders has created a new illness, somatic symptom disorder, with which to label people with chronic diseases. The criteria for this disorder is met if a person has one bodily symptom that is distressing and/or disruptive to daily life (think about all those people who complain about back pain for starters) and then having one of the following three reactions for longer than six months: 1) ‘disproportionate’ thoughts about the seriousness of their symptom(s); or 2) a high level of anxiety about their health; or, 3) devoting excessive time and energy to symptoms or health concerns. Although people may rightly lose sleep worrying about the nature of or progress of their disease, or pursuing the treatments or lack thereof for their suffering, the APA now tells us that to do so is pathological and that basically we’re all hypochondriacs.
Listening to the APA is pathological. Even without thinking about, seeking treatment, or worrying about my illness, at 46 I continue to have days when I go to bed for 3 hours in the afternoon, due to complete exhaustion, even with my sedentary life. While my peers are in the office, working a truly insane 60 hour week in some cases, I’m stressed that for the forseeable future, I’ll have to make my 15 hour a week quota, while managing to have some semblance of the other elements of a balanced life: time with family, walks, spiritual reflection, friendships, community. I’m not sure how I’m going to make that meagre amount happen without crashing completely.
Of course, I’m going to try, even if life may seem more about work and rest and nothing else. However, right now, I can recognize at this moment that I am a sick person. I can think of myself as a person deserving compassion. I can only hope that the APA doesn’t create a narcissistic compassion disorder in the meantime!
Many blessings,
Jane
