Chronic illness is difficult to understand because quite often, there is no explanation as to how it unfolds. So many of us have this notion that we get sick, go to the doctor, take medicine and then, we feel better. The other notion we have is that if there is no cure, then a person would die. Chronic illness is different because of the advances in medicines that have slowed down the progression and impact of diseases that were once terminal. Therefore, chronic illness isn’t something we die of; it is something we must live with.
Autoimmune diseases, cancer, diabetes and fibromyalgia are chronic diseases that often begin with an individual experiencing symptoms, which at first, come and go. With auto immune diseases and other conditions similar to fibromyalgia and chronic fatigue syndrome, quite often patients go for years trying to find out what is wrong with them and along the way, they become frustrated wondering if the symptoms are all in our heads. When you receive a diagnosis, you feel a sense of relief because despite how frightening the diagnosis, the first thing you realize is that you are not crazy. That relief eventually turns to confusion, frustration and grief.
For each of us, the course of emotion after a diagnosis is different. Some of us will be taken by extreme sadness, others grief stricken or detached. That is the response that disease brings to our lives because of the sense of loss and control that we no longer have over our bodies. With chronic illness, we go on dealing with emotional changes and progression that manifest depending on how we feel physically on any given day. The first part usually is trying to figure out who we are now that we are sick and when you have no visible signs of disease, you find every way to hide the disease so you can keep your autonomy and identity in tact.
Grief and anguish as a result of unwelcome changes are the ones that we keep private. We wonder what society and those around us expect from us now that we are sick. How are we supposed to behave? Will people treat us differently? Will they think less of us? Do we overcome our conditions to prove something and what is we have to prove? There is no doubt that chronic illness brings with it uncertainty and chronic illness will change us whether we want it to or not. If anything, it will affect our self-image and self-esteem. It will also affect our relationships with our friends and our families and even our professional lives and how we co-exist with our conditions will determine how we fare.
You hear so many people say that the important thing is to not let the disease define you. What does that mean anyway? For some, it means taking control of your health, for others it means that you are the same as you were prior to your diagnosis, or it may mean improving your quality of life. It can be a variety of things depending on the person but regardless, it involves change. It also means that we have to be informed about your illness to manage the physical symptoms as best you can. It means that it you must learn to live with uncertainty and unpredictability. It means that you have to strive for balance between your home and work lives. It means that you have to accept that you have limitations. Most importantly, it means that you have to learn to balance your emotions in order to survive.
Trying to explain chronic illness to friends and family is difficult and you have gotten all the looks and ridiculous questions you can handle. Getting people, especially family and close friends to understand takes an enormous toll on our emotions and adds a lot of stress to our lives. I have spent a lot of years trying to explain my health to family and friends. Yes, I know that some of them think I am lazy, a drama queen, a hypochondriac, or simply crazy. They offer advice on how I should eat better, sleep more, exercise more, lose weight, and other crazy things that could someone cure me or make me feel better. We have all heard it, haven’t we? This further adds to our toll of emotions.
Sometimes, I find myself sometimes teary-eyed for no apparent reason. Sometimes, I cry because I just can’t handle the pain today and it doesn’t really matter whether the pain level is less than it was the prior day. It just matters how I am feeling at any given moment. Add a whole bunch of other symptoms to the pain, and I am an emotional wreck. I go through periods where nothing can get to me and I am as tough as I will ever be, other periods where I am numb, and then, there are those days when I am emotional mess. If you suffer from a chronic illness, you know exactly what I mean by these emotional periods. The last few weeks have been difficult for me in turns of containing my emotions. I find myself teary-eyed or angry for no reason. Yesterday, I found myself crying because I was in so much pain but the fact is, I have had more painful days. It just has more to do with my emotions than my pain levels. I think that is true for anyone in a similar situation.
We never know what tomorrow will bring and sometimes, finding the support we need at the exact moment we need it isn’t easy so the best we can do is hold on and remind ourselves we are not alone. That is the emotional toll of chronic illness in a nutshell. Healthy or not, it’s the life we are stuck leading and the best any of us can do is to accept it and move forward. There are always better days ahead.