When I first decided to study psychology I was so excited to learn all about….well everything. One thing that always fascinated me was stage theories. As I grew and developed I learnt that the stages were never what I originally thought them to be………….I assumed, like most others that they were linear. Meaning, you move from one on to the next and so forth, so more like steps instead of stages.
Over the years, I have learnt that there really is nothing linear about them and although they are presented in a step by step manner, that is not necessarily the order in which they manifest. I also came to understand that passing through one stage does not equate to mastering it, neither does it mean you do not revisit that stage.
The photo above speak to the stages of grief developed by Eizabeth Kubler-Ross and David Kessler. The fact that the ribbon is twirled represents the fact that its not a straight line. Sometimes it can be like a never ending spiral. This image is more apt in my opinion.
So what are the stages I have identified in terms of chronic illness?
Shock and Denial
Truth is life was pretty good, going along without a care in the world, well no major ones anyway; then illness happened. I was shocked and many times I said ” this can’t be happening”. Whenever something new pops up I find myself surprised. Someone actually said to me ” you should be accustomed by now, why you acting surprised? This stuff always happening to you.”
I’ve learnt there is a progressive nature to chronic illness and issues faced when ill. So if I use my ever changing GI and diet issues as an example: every time I have a reaction to a different food that once before I was able to eat I do go into shock and there is an element of denial.
In terms of the Pelvic Congestion Syndrome and the Endometriosis, the same thing happens. Even when I know whatever has happened is possible for someone with these conditions, I am still shocked.
After being shocked I automatically get angry. In my mind I have had enough challenges, enough surgeries and procedures and enough medications to last a lifetime. I find myself more and more frustrated.
Sometimes I am angry at God and let Him have it and then feel guilty about being ungrateful when I should just be grateful for all the blessings I do have. Other times I am angry at myself; wondering if I had not done so and so or if I had approached a situation differently, if the outcome would have been the same.
I get angry when I think about all the things I can no longer do; sometimes I just look around the house and I get angry because I know if I were not ill the house would be cleaner and more organized or more would have been done with it in terms of being finished……if my finances weren’t focused mainly in healthcare.
I look at what needs my children have and try to figure out how we are going to balance their needs with the limited finances and I am angry………..because if I wasn’t ill …..things won’t be so difficult………….or so I think anyway.
I get miserable and irritable and piggish. I snap at my husband and children and/ or shut them out completely…………well try to anyway. Then I feel guilty because its not their fault that all this is happening to me and then I am embarrassed at my behaviour and then I am angry again.
Next I become overwhelmed. This doesn’t take much time to achieve really. I just have to start thinking about what my life was/ could be vs what it is and there it is.
I find the darkest moments are when I am in pain. The type of pain that forces me to codeine and tramadol together or into the doctor’s office for IV meds. This week it got to that point where I spent 2 hours nursing a morphine IV.
Its almost as if in those moments all the activities, dreams, desires etc. that I have given up come rushing back to my mind and push me further down into darkness. Its an all out fight to keep positive in that moment. I do the best I can….listen to music, sing, quote Bible promises, read good books, do in bed activities with the children, watch movies………..I try. ………..I continue to try.
I have found that its at this point that my stages stop being linear. From here I go back to denial or anger; depending on the particular issue at hand.
This week I went back to anger because I just had surgery in May and spent thousands of dollars that I didn’t have and 3 months later I am back on IV morphine.
Dialogue and Bargaining
This stage is where I believe I spend most of my time. I search for answers and talk to others about what is happening. Even though I was angry about the surgery not being the type of success I wanted I still sought to understand why that happened.
You see, from a rational, objective standpoint I do understand. I understand the diseases and my body and I can see why I am presently in the space that I am in. This does nothing to help in the midst of the flare though. This is all left brain stuff and when in pain its my right brain that takes over. Its all emotions………..not facts.
Thankfully, I am trained to help people in the exact situation in which I find myself. So I know what to do to engage the left brain and calm down. It does work, I am calm………just I would like to be calm and pain free at the same time 🙂
For me relief comes in relinquishing control of the very thing I know I cannot control. When I accept my life for what it is I can progress. I cannot control the illnesses, all I can do is adjust and make the most of what remains.
Ironically, this week I had an epiphany concerning acceptance. As much as I had said before that I accept my reality; deep down I was still in a form of denial. This is tricky because there is a line between acceptance and giving up that sometimes gets blurred. They are not the same things.
So I accept that I have Endometriosis and Pelvic Congestion Syndrome. I have Fructose Malabsorption and GI issues related to food sensitivities and intolerance. I do what I can to handle each situation; be it tweaking the diet; changing my clothing/ shoes; having minimal social life outside home; reducing my driving and the times of the day in which I drive; taking more breaks; wearing compression hosiery etc. etc.
This acceptance helps me to move forward. The challenge is creating a new life instead of constantly mourning the old one. I’m still working on this 😉
Truth is, just as we experience grief and loss over a person, job, pet, friendship …..that is no longer a part of our lives; we experience the same when examining the impact that chronic illness has had on our lives. Many times we don’t view it this way, therefore we don’t apply the coping strategies and techniques that we would in that situation.
Chronic illness steals life as we know it. There is a death, there is a loss………….there is no going back to the life we knew. Just as when a loved one dies we need to create a new normal in order to go on; so it is with chronic illness.
I mourn the life I had, yet I am grateful to still have life. As I seek to create the new normal/ the new life………..the stages are ever before me. I would love to be always in the space of acceptance and moving on to/ having a meaningful life but life isn’t linear. I will be shocked and in denial from time to time and I will get angry. The nature of chronic illness may cause moments of depression and I will bargain and seek dialogue.
As unwelcome as this process is…………..it is the process. I must go through it to make my new life more meaningful and enjoyable. One day I will look back, being grateful for the journey and the process without being stuck in what was.
I focus on what is and for that I am grateful.