Life is all about choices. What career path do you want to take? Turn left, or right? Do you want to be single or find a partner? What would you like for dinner tonight? These are all things in our control that we can decide every day of our lives. We are constantly presented with options that ultimately take us down one road versus another. But what happens when something is put in front of us that we did not want or anticipate?
For me, the ultimate tsunami that crashed into my life was my rare disease. I was forced to grapple with this thing that so rudely disrupted my power of choice. And, so I began the journey through the five stages of grief. Elisabeth Kubler-Ross developed the five stages of grief in her 1969 book, “On Death and Dying.” Some might think that there was no death that had occurred here. I would respectfully disagree. I was grieving the loss of my former self. To be honest, I still am.
The process of grieving a loss does not happen in a straight line. I am sure many of us have visited the stages many times. Stage one is denial. I was in this stage for quite some time. It was denial and pure shock that resulted in a complete numbness all throughout my body and mind. Stage two is anger. There is so much that lies here at the root of anger. The many questions that will remain unanswered. Why was this given to me? Why now? Why do I feel so far behind from my peers? Some days I desire to be this healthy young woman who is blissfully unaware of the complexities living with a chronic illness.
Stage three is bargaining. My dad used to ask my doctors constantly “What if she has more iron in her diet?” “What if she just eats a big steak?” If only it were that easy to feel better. You start to question your every move before diagnosis. Is there something I could have done differently or better?
Stage four is depression. Having a rare disease can feel isolating and like no one understands what you are up against. It takes strength to ask for what we need and to know that we cannot do this alone. I keep going because I have hope that there is something bigger on the horizon waiting for me that I have not yet discovered.
Stage five is acceptance. This does not mean that we are magically okay with the loss or that we just move on quickly. Acceptance to me means that we begin to accept the reality of the loss. We are able to be present in this moment and adapt to the current circumstances. Just as in any other stage, going in and out of acceptance is part of the process. There are times that I feel I can manage the current reality of my disease, and times that I get furious and feel stuck. This journey is most definitely a rollercoaster.
The sixth and final stage of grief is meaning. I was given this rare disease, not by choice. It is here to stay. I may never understand why this happened, just like many other patients. Now that this has happened, what is my response to the diagnosis? Meaning is making those little connections and finding the beauty amid the loss. I’ve been able to discover ways to take the lemons that were given to me and make my unique brand of lemonade.
My hope is that we can all find some sense of meaning in our own lives. My hope is that as we continue to be open and grow, that the grief becomes smaller. Yes…I am a patient with a rare disease, but it is crucial to remember that I am so much more than that, and so are you. Your diagnosis is a part of you, but it does not define you.
–Sarah Nesheim
