Anytime one experiences a loss or a sudden change in life grief is to follow. It’s a natural human experience but it makes us uncomfortable. We don’t speak of it in our society. When someone you love dies, you are expected to “get over it” after the funeral and resume what appears to be a normal life while grieving is done in private. When you are the one dying you are expected to put on a brave face. In all actuality, grief may stay with us for days, weeks months or years or a lifetime. There is no set standard on how much time it should take to grieve. Grief associated with loss of a loved one is more accepted in society, but what about the grief that comes with the loss of a job, leaving home, the breakup of a relationship, or the onset of a fatal or chronic illness? Sometimes we don’t even acknowledge that we are grieving over these circumstances.
A lot of people diagnosed with rheumatoid arthritis don’t know what word to put on the way they are feeling. Some will admit to being afraid of the unknown but few acknowledge grief and spend a lot of time in unresolved grief struggling to get their old lives back. Illness is difficult to accept. It’s okay to grieve over those changes in your life, but it’s important not to get stuck in the mire of yearning for things to be different.
A well known psychology expert on grief, Dr. Elizabeth Kubler Ross, identified five stages of grief and/or dying during her career. These stages are universal to any loss or sudden change that brings upheaval to one’s life. Depending on the type of loss or change some can move through these stages quickly coming to complete acceptance while others move back and forth through these stages throughout a lifetime. No one way is right or wrong, but in order to heal our grieving hearts we do need to acknowledge we are grieving. As you read through the five stages identified by Ross, please apply these to yourself and your grief regarding RA.
Five Stages of Grief or Dying
- Denial – The loss has not yet sunk in and is not likely to be acknowledged.
- Anger – Hostile, aggressive, and personal expression of anger may be directed at the situation in general, towards yourself, toward significant others, toward the one that is dying or has died, and members of the healthcare community.
- Bargaining – An attempt to make a deal, usually with God, for another outcome.
- Depression – The loss is acknowledged, but profound despair is often felt.
- Acceptance – Recognition that one must continue with their life.
Wouldn’t it be nice if we could just bound through steps 1-5 and be finished with the icky business of grieving? I doesn’t work that way. Grieving can’t be forced nor should be be. It’s an individual process that should be free of judgement from others. The way we grieve is a individual process yet we do have all five of these steps in common. It’s perfectly normal to move back and forth through these stages. Also, stop to consider that your spouse, children, other loved ones and friends may also be grieving along with you over your loss of health and their stage of grief may not be the same as yours and they may or may not come to acceptance with you. We need to be respectful of each other and not expect others to jump through these stages like hoops.
I grieve the loss of my health. When I was first diagnosed with S-RA I didn’t want to believe it. The doctor had to be wrong (denial). Within three months, I had scheduled an appointment with a second rheumatologist for another opinion. While I waited for this second specialists appointments I was angry that I was being dealt a chronic illness, angry that the first doctor appeared to eager to jump into chemotherapy treatment when my mind was reeling, and angry at my own body for turning against itself (anger). Since that diagnosis and the confirmation by a second opinion, I can’t tell you how many times I’ve cried out to God (bargaining) to take this illness from me and I’d do whatever He wanted. I’ve also experienced depression as realized I can’t make this illness go away and there have been moments I’ve wanted to die just to make the pain go away (depression). In the last four years I’ve bounced from one aspect of stages 1-5 to another like a ping pong ball. Most recently I’ve been so angry about the loss of financial freedom and hardship that comes with struggling over paying for medical care that I threw myself into a flare. I may light on stage 5 for a bit, but it’s not lasting because something will invariably go awry outside my scope of control with sends be back into one of the other stages. I won’t be dishonest and say I’ve got this all worked out because I don’t. I’m human.
Having been a oncology nurse most of my nursing career, I did see many terminal cancer patients come to acceptance at stage 5 and I saw the peace that washed over their being when they finally knew they couldn’t win the battle so they accepted it and just worked on their relationships for the rest of the time they had left. I think it takes great courage to get to acceptance. The patients I saw reach acceptance were not uniquely strong or wracked with regrets. They were at peace with themselves, family and God. They chose to put their circumstances in the hands of their creator and just loved those around them until they drew their last breaths. They would often tell me how “blessed” they felt. I feel privileged to have been a witness to their experience. I also saw the flip side of that where patients remained in denial or in anger and fought for every breath as they were dying. They were not at peace and it was for me to see them pass without acceptance, but they could not help how they felt. You can’t force yourself into these stages, but being aware of them does help you understand yourself a bit better when you are struggling with illness.
Dr. Ross once said, “You will not grow if you sit in a beautiful flower garden, and somebody brings you gorgeous food on a silver platter. But you will grow if you are sick, if you are in pain, if you experience losses, and if you do not put your head in the sand, but take the pain and learn to accept it, not as a curse or a punishment, but as a gift to you with a very, very specific purpose,”. I didn’t understand the meaning of that quote when I first studied Dr. Ross’s work, but I do now after witnessing it first hand in the lives of others and now in my own life. RA is a terrible disease, but it is not a life sentence into a world of hell unless you make it that way. There are many things I’ve learned along the journey that I would have missed otherwise. How boring life would be if it never changed! RA has slowed me down so that I can have a relationship with God that I was once too busy to cultivate. I really see people now whereas before RA they were just a blur passing me by. I won’t ever get my old life back and I don’t want it back. I’m still grieving the loss of health and sometimes the challenges are frustrating, but Dr. Ross was right; I’m growing and I have hope.