Grief is Not a One-time Event

Grief is Not a One-time Event

Through the Fog

Grief often hits you when you least expect it. It’s never convenient and it’s usually messy. Grief comes as a result of loss. In this case, it’s the loss of our life as we knew it, the loss of who we were and the dreams we had to let go of. Illness is a thief that robs us of so much!

I think the strongest times of grief are soon after our diagnosis, when we’ve had some time to let that sink in. We are not often prepared for the waves that threaten to drown us. We need to acknowledge and work our way through it, not stuff it down. Although painful at the time, we will get to a healthier place faster by facing it head on. There is a fine line between the past and the emerging new and different you. You are still you, it’s the packaging is different.

You are NOT less than, just different than. As we are all well aware, it’s hard to let go of one and embrace the other. I think we will always go through seasons of loss, but the times between become further apart, and less painful over time.

What are some of the things we grieve over? Loss of energy and strength, loss of a job, loss of friends and/or a spouse, the inability to accomplish all that we used to, running on empty more than we like, loss of physical autonomy, not being able to parent the way we want, and the guilt of all of those.

Grieve, then treat as gift

You may be asking yourself what you did to deserve this diagnosis. You may be thinking that your life is over or, at the very least, will never be the same. You did NOTHING to deserve this. I chose a couple of years ago to look at my diagnosis as a gift and an opportunity to encourage others as we travel this unpredictable road called fibromyalgia.

Getting to the place of accepting this does not mean you’re saying that you’re OK with it. It just says you are willing to make the best of it. I think it’s a good idea to occasionally take stock of where we are in this journey, and see how we can use this to make a difference in the lives of others. Constant introspection can be crippling. Let’s be outward and other focused, all the while loving ourselves enough to invest in good self-care.

Don’t be afraid of grief, think of it as being on a roller coaster. At times you will be afraid, and at times you really will still feel joy.

I would love to hear your story.

Note: Fibromyalgia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fibromyalgia News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to fibromyalgia.

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  1. Patrice says:

    I agree that grief is not a one time event. I’ve had fibromyalgia for 21 years now and it has SHATTERED the life I thought I was going to have. After all these years I have learned to change my life and adapt but I still have times of intense grief. I carry on but in a much reduced manner.

    I would sure love some idea on how to create income from home. My husband works, but one income these days, with a family,is hard.(I developed fIbromyalgia after my last pregnancy).

  2. Sha'ula says:

    Robin: I agree; however, as I reflected on life in general I came to the realization that from birth on we all are in an continuous flux of loss and grief. Starting with leaving the womb; now being hungry, tired and wet when the womb provided everything. Getting a new sibling, loss and grief. Separating from parent(s) via day care, loss and grief. Going to school or new school, loss and grief, losing friendships or finding out the boy/girlfriend or spouse was not honest, loss and grief on and on it goes. As humans we need to adapt to this life cycle of on-going loss and grief through cultivating resilience, much like our Service members who are going on their 6th or 7th deployment. It’s just that I wasn’t expecting so much loss of self through this disease nor for this length of time (30 plus years). Daily I force myself out of bed and face a new day with hope. I tell myself, “Hey, don’t you want to get up for that great cup of Pumpkin Spice Starbucks?” I must create ways in which I can see tangible evidence of positives in my life (even if it is getting to take a bubble bath, having favorite meal, etc.) We fibies are a resilient bunch. We are creative in finding simple ways of creating hope, resilience and enjoyment in life. Seeing the sun, walking outside for moment, reading a good book, and especially laughing at our selves. Yes, the disease is cruel, but I am still here. The alternative would have meant never seeing my children grow up to be happy, grand kids, great spouse, friends and supportive therapy pets, etc. And lastly, those of us who were once pilgrims can teach and support the NFs or Newby Fibie how to cope with the disease. Daily, I look for previously unknown to me and creative methods to cope and gratefully share with the NFs.

  3. Joanne says:

    I need your article to read every day for a while because I have been dealing with so much this past year. I’ve been my Mother’s executor for the past year while my fibromyalgia has become worse and worse. A friend and I packed everything in my Mother’s house early this year and my energy was fine but has gone down to almost none at this point. I have anxiety at times with breathing problems, but just keep trying to do what I can. I am also in counseling to deal with grief about losing loved ones. Thank you for knowing what my life is like!

    • Robin Dix says:

      Joanne, first let me say I’m so sorry about the loss of your mom. Loss and anxiety can wreak havoc with our Fibro, putting us in flares. I’m here for you if you need to talk. ????

  4. Jen says:

    Thank you for posting this. I just got my diagnosed about a month ago after 2 years of chronic pain. I have been trying to hold it together for the last couple of weeks or so, I have felt this bubble in my chest that was going to explode. Well it sure exploded. On my anniversary date on the middle of the street in the rain. I curled up in a ball and started wailing. The last straw was we couldn’t find a cab and I was walking and everything started to hurt. It was only a few blocks. I was a healthy active person and I couldn’t even walk. I stayed in bed for 2 days and got up today. What else can you do. Life goes on. I have 2 small boys. There is no option. I have to tak care of my family as best as I can.

  5. Kim says:

    Thank you for posting this. I was diagnosed with Ulcerative Colitis 2 years ago on our 15th wedding anniversary. I did not realize when the Dr. told me the diagnosis what all went along with this disease. I have body aches and joint pain all of the time now, which is also related to UC. My rheumatologist diagnosed me with fibromyalgia a couple of months ago. The fatigue and pain I feel on a daily basis is so overwhelming at times. Grieving the loss of living my life without all of these disorders is ongoing for me right now. I hate to sound like poor me, but when I can’t even get out of bed to go to work, or make it through a shower and have to crawl back into bed, that is depressing! I am trying my best to be grateful it is not much worse, like cancer. Yet, I am also trying to find a balance in my life and figure out how to navigate with UC and fibromyalgia.

  6. kelly hemingway says:

    Hi Robyn,
    Thank you for this article- its spot on!
    I am a registered nurse and nursing instructor- or should I say, I was. My career was stolen by Fibromyalgia and chronic illness. I was devastated, angry, and full of grief. After finally realizing I had the choice to be angry all my life or turn my mess into a message, I chose the latter. I took my nursing knowledge and my experience with chronic illness and combined them together to write a book called “Fibromyalgia: Hope Beyond the Pain.” I didn’t want my pain, to go in vain. I am a nurse at heart, so this is one way I can continue helping people.

    • Patrice says:

      Awesome Kelly that you would use your knowledge
      to help others, despite your pain!!!

      I too can no longer work. Used to be an elementary school teacher…still love kids.

      Anyway, way to go for rising above and using you difficulties for good!!!

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