It may sound strange but once you have been diagnosed with a chronic illness or told the condition you have is incurable there are many emotions that follow. In many ways it is just like the grieving process and it is important to understand that it is ok to grieve the loss of who you once were, because you will never be the same again. Whether that’s a good or a bad thing is up to you and how you choose to let your illness define you.
The 5 stages of grief and how they relate to chronic illness.
1. Denial and isolation
On getting your diagnosis, whether that is after years of symptoms and failed diagnosis from doctors, a brand new condition or quick diagnosis, almost everyone goes into denial in some form. The denial may be that the diagnosis is wrong, that it’s not possible given the permanence of the diagnosis or the denial that it can’t be you. Why should it be me, it’s not fair! Or that this only happens to other people, maybe the doctors got it wrong, maybe you’ll be the exception to the rule? It is easy during this stage to become a hermit, to step back from family and friends and isolate yourself from your network, to want to bury your head under the blanket and not come out. After all, this can’t be right, this isn’t the life you expected, so it just can’t be true.
Once you’ve moved from denial the anger hits like a wave of fire. You get angry that this is your lot in life, that you had plans, big plans for life that won’t happen now because of your diagnosis. Whether it’s career plans, having a family or other life goals, it’s hard not to get angry at what’s been taken away from you. The what if’s, the could have been, the ‘normal’ life you deserve to have. Anger at all that potential loss, it’s just not fair.
Next comes bargaining, whether it’s bargaining with a higher power or with yourself there is always an element of bargaining or begging for things to be different, if I just do X then maybe I will get better. The self-doubt and wondering whether you deserve this, the thoughts of whether or not you’re a good person, perhaps questioning whether you have done something to deserve this sentence? Thinking to yourself if you are a better person or try harder then maybe this will change. What wouldn’t you do to make this better?
Inevitably depression in some form or another follows. You begin to feel the weight of the diagnosis, the reality of the life to come and the fear of the unknown. How can you not feel depressed at losing the life you once envisioned to the life you will now have? It’s not fair, why me? What did I do to deserve this? Who will I be now that this is my life? The gravity of the situation can weigh you down like a jacket made of lead. It is all too easy to live in this space and not claw your way back out.
Finally there is acceptance. Everyone gets there is their own time, for some this may take a few weeks, for others it may be years. But once you reach the point of acceptance something amazing can happen. You can feel free again. Whilst you will never be free of your condition you can be free from has been weighing you down during the previous stages. It is your opportunity to let go of the denial, the bargaining anger, the denials, the depression and accept for better or worse this is where you are and the hand you have been dealt.
Once you accept this you can find the inner strength to fight, to look for the positives, to understand your diagnosis and what it means and make a plan for yourself. Figure out what works for you, whether it’s a change in diet or exercise, starting meditation or yoga, writing or painting, whatever helps you feel at peace. Because whilst your body may be waging war on itself you can find strength of mind, a resilience you never knew you had and courage to fight for your best life.
Accepting the loss of who you were does not mean giving up, it means accepting what once was but also accepting who you now are and celebrating the warrior you are. Think of yourself as a butterfly awakening, you’ve undergone a metamorphosis from one version of you to another, and this one can be even more beautiful and strong and you can soar if you choose to.
So take the time to travel through these stages, to understand yourself and your feelings and find your way through the dark maze of grief. Keep going and keep fighting and stay strong.
In the wise words of Dr Seuss remember this:
“Today you are you, that is truer than true. There is no one alive who is you-er than you. Shout aloud, I am glad to be what I am. Thank goodness I’m not a ham, or a clam, or a dusty old jar of gooseberry jam. I am what I am, what a great thing to be. If I say so myself, happy everyday to me!”