The Five Stages of Coming to Terms With Diagnosis
There I was, sitting in the doctor’s office when he looked me in the eye and said “Chris, I believe that you have Adult Onset Still’s Disease”.
“Okay,” I thought to myself. “So what? Just give me the cure and let’s just call this brief patient-doctor relationship a success and shake hands and say ta-ta.”
It wasn’t until I started the marathon research session over the next few days did I realise the gravitas of the situation. I had an incurable disease. That would almost undoubtedly cause more pain than it had already caused. The symptoms could be managed, but only with the help of heavy-duty medication. This, most certainly, was not a bad case of the flu.
Right there, at my computer, I felt my heart break. “No!” I thought to myself. “This is not happening to me!”
Little did I know that I had already started my journey with grief. When we normally think of grief it tells the story of loss. We feel grief at the passing of a close friend or family member, and we mourn accordingly. Of course, when a diagnosis like Still’s Disease is handed down, there is also loss - but in a different way….… Instead of losing someone or something close to us, we lose living without pain, we lose things that used to be easy. Life will never be the same, and we suffer loss. When we suffer loss, we start the process of grief.
1. “You, Sir, must be mistaken…”
The first stage of grief is denial. This is the voice inside your head that screams “No! You have it all wrong! I can’t be sick! You’ve mixed up the blood tests and got it all wrong! Just tell me that you’ve made a simple mistake and I won’t sue you… please?”
You won’t pause to cry or even acknowledge the diagnosis. At this point you don’t even have the illness (at least in your own head). I remember siting at a cafe eating hot chips while my girlfriend sobbed next to me. I remember thinking: “What’s the big deal? Even if I do have this ‘Still’s’ thing, I won’t even notice it. It’ll be gone before the next full moon.”
2. “Don’t get me angry. You wouldn’t like me when I’m angry…”
The next stage in the grief process is anger. You scream “why me?” and lash out at everyone and anyone. You blame the doctor for giving you the diagnosis. You blame your family for not understanding. You blame god for creating this disease and you blame Sir George Frederic Still for finding the damn thing in the first place and putting his name to it.
Probably more than anyone or anything else, so often you turn your anger back onto yourself and blame yourself for getting sick. When you are in this stage and look back with 20/20 hindsight, everything from not taking echinacea to having too many drinks last Christmas will seem the likely cause of your illness.
You fume, cry and whine.
3. “I’ll trade you one Still’s Disease for a flu, a dodgy knee and a nervous tic…”
Once the anger subsides, the bargaining stage of the grief process begins. Although this is almost never rational, you hold negotiations with yourself (”Once I stop hurting, I’ll go to the gym four times a week and never eat chocolate again”), with God (”Dear God, what’s the chance of throwing a brother a lifeline here?) or with the doctor (”I know you have a new drug up your sleeve. I’ll be part of the test trial. C’mon, it’ll be a win-win!”) and with anyone else that could be part of a trade.
It is not uncommon for people in this stage to wish, pray and beg.
4. “Excuse me, someone’s left their black dog here with me…”
Depression follows the bargaining stage. I remember feeling completely hopeless, lying in bed with tears streaming down my face, thinking to myself “How can I live like this for the next 50 years?!”. I slid quickly into a black hole of bitterness, self pity and numbness.
In this stage, all hopes at gaining any control back over your life seem to slip out of your grasp. This stage often has side effects. Drug and alcohol abuse, addictions to food, sex or anything else that brings pleasure - no matter how fleetingly - often take hold in this stage.
Unless resolved, many people stay in this stage for weeks, months or even years slipping further away from the final stage.
5. “I wouldn’t invite it to dinner, but we’re getting along now…”
The final stage of the grief process is acceptance. This doesn’t mean the difficulty of living with the illness is any less, but the walls of resistance are broken down. Instead of fighting the diagnosis, you accept the illness as part of you and your life. In this stage many people find a silver lining to their illness: maybe it introduced you to someone or something that you appreciate. Maybe it allowed you to find faith or spirituality. Whatever it is, illness - believe it or not - can be a major personal development tool.
Everyone has heard the story of the cancer patient that hours before their death find suddently find peace and beam with a radiance that they never had found in their ‘healthy’ life. Acceptance can appear in the most unlikely of situations.
The interesting thing about the grief process is that the stages are sequential. You will always move through denial before reaching anger, and so on. So how long does the grief process take? Well, that depends. Some can move through the process relatively quickly, while others stagnate in a stage for weeks or months. Getting counselling through a qualified therapist helped me, as well as dedicated meditation practice.
Remember that this process isn’t something to fight. It’s normal to feel pain, anger, loss and frustration when a diagnosis like Still’s Disease is handed down - it proves that we’re human. When we embrace these feelings instead of resisting them, we gradually move towards strength, healing and ultimately accepeptance.
What stage in the grief process are you? Please leave a comment below.
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