You are not your illness
I always have a bit of a problem with these statements. On the one hand, yes, I don’t want to be defined by my illness and the pain is not all that I am by any means. I acknowledge the pain limits who I am… by that I mean a certain level of pain sort of muffles the personality. It does not let you to the surface and that is why a certain level of pain is difficult to mask from loved ones… because they can tell your personality has been dulled around the edges and you are simply not all there. But that is pain and by its nature that is the way it is. No one would be any different it just so happens with chronic pain this happens more often. But I don’t define myself as a crippled person, as this person crippled by my illness, as the essence of myself defined by my symptoms. And I would completely agree with this statement fifteen years ago when I fought to ensure my illness did not define me and I fought to ensure who I was was not altered by my illness…. this sort of dualistic look at my illness. It could affect my body, but my mind was my own… it would not change. I was still me.
Yet after time and increased symptoms and chronic migraines on top of fibromyalgia and giving up my academic career and trying to just hold onto a job my perspective has changed, because who I was has changed. I had to change because I had to survive. In fact, early on with just fibromyalgia, I changed dramatically in order to develop coping strategies for that chronic pain which helped me adapt and get through my Master of Arts. Dramatically changed how I looked at reality because if I had not, I would not have been able to cope with the pain. Going from a rather cynical and very sarcastic person to a more realistic but humorous person was an active effort on my part to stop seeing things a certain way and to cultivate the lighter humour that helps me deal with pain, rather than my dark humour which definitely does not. And this is a normal process…. chronic illness will positively or negatively highlight facets of our personality. So it does change us as we go through that first struggle to cope.
Even so…. I saw that as just adapting. Bringing out a different aspect of myself in order to cope. Learning a facade of well-being that I would mask myself with because the lie of happiness and humour and goofiness becomes a truth that sinks into you… and when you laugh with others it fools them and you and not focusing on the pain makes it easier to bear.
Then the migraines were added in and became chronic and I had to go into the workforce because I could not think clearly enough to go through my Ph.D. I hoped for treatment to help and then I would go back to it but… such is life, things got rapidly worse because well, work is work. So years of that increased pain and that constant battering against a person is a little different than just the changes one goes through when initially coping with chronic pain. It fractures a person. Wounds a person. Breaks a person. Of course, you see yourself for who you really are… because you see all your strength and all your weakness together as you struggle to survive.
How could you not see yourself in your purest form? Raw and exposed. There is nothing I don’t know about how I think about pain, my illness, how I react to it, to stimulus, to stress… that I have not learned and thought about and tried to conquer and heal and mend and broken again and held together. I know myself very well. But… knowing all that does not necessarily lead to healing when the wounds keep on happening. It is just this continuous process where the best we can hope for is coping. We learn the tricks on how we can manage ourselves really. Trick ourselves, lie to ourselves, fool our brains into thinking the way we need it to think, distract it in ways that seem odd to others but are necessary to us… whatever works.
But… I am not my illness? Maybe not, but it has created me. Changed me. Made me. And in some ways, I really, really am my illness. In some ways, I am the person I have always been and have the same interests and general personality traits. However, some traits are there because of my illness. My absentmindedness. My inability to remember names and faces. My short-term and even long-term memory problems. My notorious clumsiness. People know these traits about me… I know these traits about me… I make jokes about them… but they are my illness. Even the persistent migraine auras have been there so long it is such a normal thing to see things the way I do even if it is so much worse now… such that my perceptions of reality are just different than anyone else, such that I cannot explain it, but it is the way I perceive reality…. how can I separate such a fundamental thing from who I am?
Some symptoms are so ingrained… like the forgetfulness, fibrofog, problems with naming objects, people, problems with communications… such that they become part of how people see you and you see yourself. You can’t peel all parts of the illness away and find who you are at the core, at essence, without the symptoms of the illness because it affects so many areas of the brain and how it functions…. the cognitive ones a prime example, the senses I know seem like you can easily see they are not normal but still I have no idea what normal perception is anymore, I don’t know how it would be to see normally anymore. And how about mood? Our mood is affected by serotonin being low and with migraines, our mood can be a symptom pre-migraine before the aura stage of a migraine… where there can be depression, anxiety, or hypomanic moods. No event to stimulus in the external world caused the mood… the illness caused it… but at times we feel it is us and we respond like it is us because you can’t always tell where it is coming from.
The very way we live our life is different. How we pace. How we plan. How we think about our career and make choices that affect it. Our life goals are different and reflected in this different pace of life. How can my illness not change how I interpret my life, then? How can the experience of illness, of pain, not change who I fundamentally am? It is a constant stressor. It is a profound experience.
In the end, I am me. I am the me with an illness. And it has profoundly changed me. Simple as that.