When anyone is diagnosed with fibromyalgia, I feel as if that person grieves who they once were and have to come to accept who they have become. Fibromyalgia alters a person’s life so drastically. Every area of your life is usually impacted to some degree. It took me awhile to realize this. Whether it is a minor change or enormous change, people with fibromyalgia have to learn to live with chronic pain being present in their everyday lives. One of the hardest things to do is to accept and be okay with your diagnosis. At least for me, I felt I was in denial for the longest time. On my good days I often thought to myself, “Awesome I’m better and I can return back to my life before fibromyalgia took a front seat.” When the good day starts to fade into the background and the pain begins to slowly creep back in, emotions can run high and spiral all over the place.
Have you ever heard of the grief cycle? I first learned about the stages of grief when I was enrolled in a psychology course – training to become a mental health rehabilitation worker. When people close to us, pass away and we are grieving the loss, our emotions tend to be all over the place – one minute you are happy, the next sad, or anger sets in. It got thinking, this grief cycle can also be applied to those who live with a chronic condition such as fibromyalgia. No matter what a person is grieving, there can be five different stages of grief that you may go through. I know some grief models discuss seven stages, but in my blog, I will be referring to the 5 stages of grief model. Not everyone will follow these stages in the same order, nor go through each stage. One can also be in a stage and revert back to the previous stage. We all are equipped with different coping mechanisms and grief will affect each and every one of us differently!!
In my own fibromyalgia journey in the last three years, I know I have been in stages of grief and returned several times to different stages. Just like the above picture, my road looked like the image on the right side. I still find myself having mixed emotions – and I dont think that will ever stop. Having fibromyalgia is like being on a rollercoaster- ups and downs. I go back and forth between the different stages, even though I have accepted that my life will look differently then before diagnosis.
Denial – When I first got diagnosed I was shocked with the diagnosis of fibromyalgia. I had a doctor tell me years ago (2014 ish) that he suspected I had fibromyalgia then. I shrugged it off and never thought about it again. Back to 2019…I initially went to the doctor because I was always tired – which soon became apparent that it was fatigue not just tiredness. My hands and elbows were always in constant pain too. The initial action of any doctor is to probably run blood work. Mine kept coming back normal. As the pain got worse over a short period of time, my doctor diagnose me with fibromyalgia as there was no other explanation. I took some time off of work to try to get the symptoms under control. I convinced myself that the migrating pain and the deep down to the bone wrenching aches would just go away and I’d be back to work the following week. I even found myself thinking to myself, “I’m just over thinking things, the pain isn’t really there.” I even tried to convince myself that it was just a bad flu bug, even after diagnosis. I took longer off work, thinking I could heal my fibromyalgia – what I didn’t realize at the time was there no cure to fibromyalgia, only learning how to manage symptoms and learn to accept a new way of living. My medical leave from work, turned into months, a year and so on. It took me close to three years to accept my diagnosis. There are still days where I wonder if something is still undiagnosed and it really isnt fibromyalgia. For now, I carry on with life as if it is fibromyalgia and do the best, I can do every day. Some days I make it from the bed to the couch and that’s ok!!
I often find myself back to this stage. Fibromyalgia takes so much away from a person. I have learned we often take things for granted. A task such as brushing your teeth, walking up a set of stairs or even getting out of bed every morning can become so daunting – especially when you have chronic pain involved. If I do push myself to go out and do something it results in a full-blown fibro flare. Then I find myself angry with myself for pushing too hard. I know my limits, but some days, in order to enjoy life, one has to endure the pain. I find myself being angry because I don’t have the energy to go for a coffee with a friend, a birthday celebration or even a vacation away. Fibromyalgia has taken away from me being able to take part in all my favorite hobbies such as hiking or playing golf. I’ve had to learn to enjoy new hobbies – which some days means binge watching a favorite tv show on Netflix to pass the day in pain. I used to read a book a week, now I can’t get through a book at all. My new hobby is to listen to an audiobook instead.
Research often reports that depression is high for those who get diagnosed with a chronic condition. How can one not become depressed when they have lost so much independence and enjoyment? For the most part, humans are very sociable, but for those who are dealing with chronic pain and fatigue, your social life soon takes a backseat. I have had to cancel plans so many times, due to the fact that I just don’t feel good enough to leave the house. It becomes very frustrating, and one can start to feel depressed from having to isolate themselves due to high pain levels. I’ve become horrible at keeping in touch with friends and family since I have been diagnosed. As of late, I try to at least text people to say hi. I never hit a full depression stage, but I would definitely say I was “down in the dumps.” I did seem to develop major anxiety which can also contribute to depressive states. I don’t have any words of wisdom for this stage, because I’m still struggling with this stage myself. I’m currently trying to live in the now and not worry about what I can’t control in regard to my fibromyalgia. I’ve learned my fibromyalgia symptoms do what they want when they want, and I can’t prevent them. I have to deal with it when it happens. I often feel overwhelmed by the endless symptoms that appear everyday with no warning. I’ve learned its ok to be angry!! Just like the saying says, “It’s okay to have bad days, just don’t unpack there!!”
At this stage, one often thinks if I take specific steps the chronic pain will disappear. I had it in my mind that if I increased my exercise and went swimming, I would get better, or if I go for more walks the pain will disappear. Boy was I wrong. Not only did it increase my pain levels, i created false hope of fixing myself. Don’t get me wrong, exercise is important, but in my specific case, adding exercise was not the simple answer. I attended a pain clinic with high hopes they could fix me. Even though I knew there was no cure for fibromyalgia, I thought specific actions would make it go away and my life return back to normal! I often would think to myself, if only I had listened to the doctor back in 2014 maybe I could have avoided being in so much pain today. Stop beating yourself up!! We are often too hard on ourselves.
Acceptance. This is the last stage. This is where one learns to be okay with the diagnosis of fibromyalgia. We have to learn how to live with a chronic condition and make changes to our lives to be able to function. It is not an easy task to learn to accept – that your life that once was, will never exist again. You have to learn to live and navigate a whole new world – the life living with chronic pain, fatigue and other symptoms that may rear their ugliness. Acceptance can be easier for some, while others may need longer to accept the reality of the situation. It took me almost three years to accept mine. Remember, there is no time frame to acceptance.
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