For the first few months, I went through all the recognized stages of grief; Denial, Anger, Bargaining, Depression and Acceptance (It’s funny when you're going through them you can’t actually name and recognize them in yourself. Nor do they follow a set sequence as you go back and forth between stages). These are natural and healthy ways of coping with major loss in our lives and experiencing these stages helped me to cope with a life altering condition.
Denial- Even though I spent many hours researching the condition, it’s symptoms, signs and the relevant research on the topic of Chronic Fatigue Syndrome, I was unrealistically adamant that I was a special case. I believed that within a few weeks I would be as right as rain and be running around the paths of my local park again. I look back now and realise how naive it must have seemed to friends and family members when I voiced this desire. As at the time I couldn’t even stand up for more than 10 minutes without feeling as if I was going to collapse. Often, I’d attempt to cook meals and ignore the pain in my upper back as I bent over the kitchen counter trying to do a task. Doing things was my way of feeling useful. So, I tried to do as much as I could and more but, in reality I was only making myself much worse.
Anger- I remember the overwhelming feeling of anger that permeated every part of my day. I was angry with my body as I felt it had let me down. You see, I had invested exercise into my daily routines for as long as I remember, to avoid any health issues. My mother had suffered with several illnesses over the years that had left her incapacitated in the latter part of her life. I was determined not to be in that position, so exercise became a necessary preventative plan for life. The miles I had run, the many exercise classes I had attended and the hours I had spent at home following keep fit videos seemed to be like a waste of time.
In addition, I was angry with people even hinting at helping me with a task. I was used to being the one that helped them, and it felt unnatural to accept the aid they offered. During this time the complacent me that was happy and lucky became aflame with indignation. Those days were difficult times for those around me. Looking back now, I realise that my actions were a natural way of dealing with the loss. I was angry at the whole world because no-one could help me to be the person I was before. It was not an easy place to be.
Bargaining- I spent hours after the illness struck rethinking my lifestyle. I had lost control over what I wanted to do. So, I began to try and regain it by bargaining. There are various ways of experiencing this stage but bargaining for me took the form of pleading unashamedly for a pass in having to suffer in this way. I remember praying and reminding God of all the good things I had done for others. For the sacrifice I had made fostering new-born babies for eight years and the time I had dedicated to him teaching children and young people. I didn’t deserve this I thought. It must be some mistake!!
Perhaps, your bargaining is wrapped up in “what if” scenarios. If only I had gone to the doctors sooner this wouldn’t have happened. If only I hadn’t exercised so much and listened to my body sooner. We all want to control how our lives pan out and the loss of being able to do that can be devastating.
Depression- This stage hit me on the head like an emotional sledgehammer. Certain realisations came together to make me realise the import of the illness and the reality of what my life would look like from now on. My visits to the doctors held little hope as there was no cure. In fact, the medical profession were reluctant to act as they were unsure of how to treat the condition. The results of every test showed that all was well, but my body was saying something very different. I just couldn’t get my head around the fact that the effects of the illness I was suffering didn’t have a solution.
My depressed self believed that if there wasn’t a cure then there was nothing to hope for. I was stuck like this for the rest of my life, and it certainly wasn’t the life I had planned. During this time, I experienced long periods of silence in which I never spoke. My feelings were so intense I couldn’t articulate the sadness and hopelessness I was feeling to anyone. No-one in my friends and family friendship circles had ever heard of this condition, and worse still no-one had experienced it. It became difficult to explain a condition to someone when in their limited understanding you were most likely to be simply tired. During this time, I had so many people telling me it was my imagination, that all I needed was a few weeks of rest and all would be well. But no-one around me understood. I stayed in this depressed state for several months. Until…
Acceptance- settled me. This came about purely by accident. I had been so frustrated with the doctors not taking me seriously and some of my friends' unsupportive reactions, that I began to do even more research. This time, with the premise that I wanted to prove this condition had a name and did exist. I remember that eye opening morning, getting another letter from a major consultant, saying that all my tests showed that there was nothing wrong with me. Whilst researching, I came across a ME support group based in Birmingham. Attached to the address details of where the group met, was a telephone number. I immediately called that number and spoke to a woman who had had a diagnosis of ME several years before. She told me her story, which amazingly was very similar to mine. She too had been met with disbelief and lack of medical interest in her condition. She gave me advice about the steps I needed to take to get a diagnosis of the condition, and from that moment on, my manner and mood changed. You see, I had met someone who knew what it was like having the illness. The things happening to me weren’t my imagination. Dear reader, it was a life transforming moment that simply taught me - I could not fight this alone!
I eventually, after years of persistence, was given a diagnosis of ME and received the help that I had craved for. For me, meeting someone who had experienced what I had been through spurred me on to never give up. Others in the same situation had been through it and come out the other side, living their new life with all its unique challenges. They survived, so could I. Since then, I’ve joined a Facebook group that is so supportive of its members as we all share the difficulties and trials that arise from having the condition.
For you, working through these stages of grief may not necessarily come in the order that it came for me. Your level of acceptance might be brought about by seeing a counsellor for a time or reading a book that resonates with your circumstances. But these categories are all areas that we must visit in order to move on from experiencing a major change in our lives. Don’t be reluctant to ask for help through any of these stages because that is what we are here for. Keep hoping because tomorrow can bring with it a new way of thinking and being.
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