Fibromyalgia and the Five Stages of Grief

five-stages-of-grief

For a short while after my ‘diagnosis’ of Fibromyalgia, I felt relieved. I felt that finally the way I felt had a name and that meant I could start getting better. That feeling was short lived. A diagnosis of a chronic, life-long condition takes some getting your head around. You feel a range of emotions, but one of the strongest for me was loss. I was in the mid-30s and I was being told that from now onwards I would be constantly in pain, I would be fatigued more often than not and that this would continue for the rest of my life. What about all the things I planned to do? The hills I hadn’t had time to climb just yet, the games and fun I wanted to have with my daughter as she grew up, the career I wanted to pursue?

The loss of your former life, along with the loss of your future dreams and aspirations does bring with it the same feeling of loss you would experience when a loved one dies and so you do find yourself going through the five stages of grief, as identified by Dr. Elisabeth Kubler-Ross.

Denial

Initially, I was most definitely in denial. I continued to search for answers and find reasons for how I was feeling; disputing the diagnosis. I would continue to push on and try to keep up with housework and working in a high-stress full-time job. I really did try to ignore it and pretend that everything was really ok and that I would stop feeling pained soon.

Anger

Eventually, it became clear that the pain and fatigue were not going away and I became angry. Angry about what I was missing out on, angry that I couldn’t do things I wanted to do, angry that no one understood what I was going through. I was also angry with myself; “Why am I so useless?”, “Why can’t I just …”. I directed my anger towards myself mostly, but I also lashed out at those closest to me. Life wasn’t fair and I needed to blame someone.

Bargaining

Over time, the anger turned to bargaining and what ifs? What if I hadn’t gone out that day and we hadn’t been broken into – would I still be ill now? What if I hadn’t done all that exercise – would my legs be hurting now? What if I had decided against the epidural when I had my daughter – would my back be so painful now? There is also the bargaining with your body and your condition. If I have a rest now, will you let me go for a run? If I ignore you, will you just GO AWAY!

Depression

Eventually, though, I started to realise that there is no getting away from my diagnosis. Feelings of grief and loss are incredibly common with chronic diseases because you are no longer able to participate in the activities that you once enjoyed and you feel a sense of immense loss for the life you once had. Feelings of inadequacy are also inevitable; leading to isolation and time spent in despair and mourning. For a long time, I was incredibly depressed. I felt like there was no point to me, that I couldn’t contribute very much to life and that I was just a waste of space. I felt a failure as a mum, as a friend, as a girlfriend, as an employee, and as a human being.

Acceptance

Through time spent managing my condition, I started to have moments of pride in what I was doing and achieving. In a bizarre way, I started to feel comfortable with my new limitations (and pushing them every now and then) and when I was in a flare, I started to understand what I needed to do and would allow myself time to recover. Through reading, learning and questioning Fibromyalgia I gained an insight into what I could and couldn’t do and if I am honest, it wasn’t as little as I first feared. Yes, I was ill, but I could still go out for a walk with the dog, still take my daughter to all her activities, still work full-time, still go to gigs and concerts, still enjoy a trip to the pub, still go on holiday and have a great time – I had to make modifications and pace myself, but I could still do a lot of things!  It really is going to be okay and it really is manageable.

Life is different and sometimes difficult, but it’s still a life, a precious life, and one I need to live as fully as possible. There are times when I get frustrated and times when I feel sad or angry, but those times are few and far between now. Finding acceptance has been a difficult road, but being here, right now, knowing what I know and what I am capable of is an incredibly powerful feeling. There is joy and there is happiness in my life again and I can see a future; a future that is full of possibilities.

Do these stages seem familiar to you? Do you think you will reach an acceptance of your diagnosis and how your life is now? Have you already reached a level of acceptance? How does it feel now to have traveled through these stages of grief and finally feel acceptance?

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9 Comments

  1. All of these are very familiar. Especially the denial. I spent so many years in complete denial. What a wonderful post. =)

    • emma

      Thank you so much. Yes, I think denial is one of the hardest things to move past and can take a very long time.

  2. Chronic Mom

    I think I go through this cycle over and over again. I’ll do really well for a while, find a place of acceptance and think I’m good with my new life. Then something will happen (usually a bad flare or something) that will send me through the stage all over again. I keep thinking i’ll one day actual stay at the acceptance stage, but it hasn’t happened yet!

    • emma

      I agree, I think it is a cycle, as I say, I go through periods of frustration, anger etc, but I think once you have real and actual acceptance you always find your way back to it … eventually. 🙂

  3. Bidefordbelle

    So agree Chronic Mom it is like a merry go round and you just can’t get off.

  4. Frances

    Sadly I find the limitations of having a long term chronic condition very restrictive – in my mind I make plans – dream up magical days and putting long term dreams into action but then my condition screams at me – the pain becomes acute , I enter yet another cycle of depression and I have to face reality & let go of desires & dreams – I wanted to achieve so much – now I feel I have accomplished very little – my soul wants to dance whilst my body acts as my prison

    • emma

      Yes, I think that this is very common, but once I reached acceptance, those periods of anger or depression got shorter. I think we always have days when we feel like giving up on everything, but certainly, in my case and hopefully others, there are days when I am determined to find a way to achieve what I wanted to and will work out the compromises and the work-arounds to make it happen. I find fighting against my condition makes the whole thing worse so I try my best to work with it.

  5. Eve

    Hey I can empathise with this so much, I have had fibro diagnosed since I turned fifteen cue a lot of other issues with me taking part too I have suffered with anxiety, depression and anorexia since being diagnosed with fibromyalgia. Bluntly I did think my life was over, I had a promising career as a sport trainer which I had to divert away from. I also became unemployed. But then I started talking to more people day to day just leaving the house briefly helps no end, so do watching comedy DVDs like Miranda! We all need to stay as cheerful as we possibly can and remember the pace which we go is the only pace we can go and not to beat ourselves up about it. Hope your having easier days everyone x

  6. Dianne

    Thank you for putting down on paper what I’ve been going through.

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