I have started this piece many times, and given it much thought and consideration. I have had many conversations with people about the grieving process and then tried to rewrite it, only to get about one paragraph written, and then delete it again.
Most of us are familiar with the “Kubler-Ross 5 stages of grief”– denial, anger, bargaining, depression and acceptance. If you have ever taken a high school or college psychology course, you probably learned about the stages of grief, which is part of my problem. As a social worker, I had several college courses where the stages of grief were covered extensively, and so I have been going about writing this article all wrong. I have been looking at the subject clinically, rather than looking at how I was personally affected by the stages of grief during my own diagnostic journey.
I have experienced my fair share of loss during my lifetime.
My grandmother died when I was about 3 or 4 years old and during the summer of 1990, I lost my grandfather and great grandmother within a month of each other. As an adult, I have lost close friends and family. I also witnessed my family grieve for me as I battled postpartum depression after the birth of my second child. So when I was diagnosed with Pompe disease in July 2015, I had not considered that I would grieve for myself. I experienced all of the stages except bargaining; I never asked “Why me?” I knew something was wrong, so receiving a diagnosis was somewhat of a relief.
Don’t get me wrong, I was in denial. I thought the doctors should redo the testing; maybe they had somehow gotten it wrong. Maybe I had been misdiagnosed. We all know that happens quite often in the rare disease community. I was angry, but my anger wasn’t focused on anyone in particular; mostly I was angry with my body — I felt like it had betrayed me.
Then, depression hit me hard.
Fortunately I had a wonderful therapist and support network of family and friends who helped me through it. And finally, I moved on to acceptance. However, I believe that none of us truly accept the lot we have been given with our rare disease diagnosis, and that’s why we advocate so fiercely for treatments, cures and better understand of the needs of rare disease patients.
In the almost four years since I was diagnosed, I have gone back and forth through the stages of grief, and at times have been in two stages at once. Every time I experience significant pain or fatigue for extended periods of time, I get depressed. Every time my illness or disability prevents me from spending time with my family or friends, I feel angry or depressed. This is where a good support network comes in to remind me that it’s OK I had to cancel and that we can reschedule.
In the last four years, I have also watched my family and friends grieve for me and the person I once was. I have lost friends who weren’t able to accept that my life has changed, and the hardest thing about losing friends is grieving for that loss every time it happened and trying to act like it hasn’t fazed me or changed me. I have tried to be cognizant of how the people in my life feel when I am talking about Pompe or when I am not feeling well because of Pompe, but I don’t expect people to be sensitive to my plight. While I have been angry about losing people who were once important to me, I have accepted it after each time. It’s true, sometimes we grieve for people who are still living.
Grief is messy. Grief is ugly. Grief can be difficult to understand, but grief is a necessary, healthy process that we all must go through, and there is no right or wrong way to do so.
I recently lost someone close to me, and during the last few days I have been trying to put on a brave face and pretend that I am not bothered by it — that I am OK, but the truth is I am confused and angry. The truth is that this anger and confusion helped me to write this and process my own grief because of Pompe.
So remember, grief is a part of life. While it is a painful process to go through, it is necessary to get to acceptance and a healthy place where we can move forward with our lives.