RARE DISEASE DAY IS TODAY
THE FIVE STAGES OF GRIEF IN PERMANENT ILLNESS
(Denial, anger, bargaining, depression, acceptance)
When you first become critically ill with something rare and difficult to diagnose, all your energy and resources are focused on getting a diagnosis. That may take a couple to a few or more years. When the diagnosis finally comes, you feel so relieved and validated that you're not even taken aback by the seriousness of it or the fact that it is incurable. You feel so hopeful that now that you have a diagnosis, you can be treated, managed, have some improvement, and get back to normal. Everything being said about your prognosis goes over your head to a large degree, because after all, there is nothing set in stone to predict your course and outcome. Every case is different and you're not "that bad" yet.
Once you know the name of your disease, you submerge yourself into researching and understanding it. You try everything there is to help yourself. Sometimes you feel convinced something is helping then, just as abruptly, it doesn't help. Something else develops. You get sicker and have to acknowledge you are declining. That is when inescapable, heart breaking, gut wrenching reality sets in. You can no longer live in denial. Your life has permanently changed. You become so angry because you are not going to get well. Life as you have known it has ended. This is your “new normal” and it will be for the rest of your life. You get mad at your body because it won’t perform like it always has. It’s a totally foreign concept that you are not going to get better. Then you start bargaining, hoping to make anything change for the better. Trade one thing out for another. Give up one thing so that maybe you can do another more easily. Finally, depression sets in because you can't change anything. You are just stuck with your body the way it is. Depression lingers a while.
Almost imperceptibly, acceptance eventually comes. One day I realized I had stopped thinking in terms of “when I get well”. That’s when I knew I had reached acceptance. I stopped living my life on hold and began to adapt to living within the boundaries of my limitations. I began to make accommodations for my disabilities and strategize ways to maximize my energy and abilities within the confines of illness. It’s not a perfect or linear process. My needs and abilities change daily. Most days are lived hour by hour and, many, minute by minute.
By Gina Baker
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