I think one of the hardest things about chronic illness is giving yourself permission to grieve the person you were.  You lose a lot of things when you become chronically ill.  You lose the energy that you used to have to do common every day things.  You lose the feeling of what it was like NOT to be in pain every day.  You lose the ability to get a good and restful nights sleep.  You lose friends because they just don’t understand and they stop coming around after awhile.  There are so many other losses, just fill in the blank with what you’ve lost.

It’s hard to let go of the life that you used to live.  I know for a lot of us it’s difficult doing simple things like taking a shower without getting completely exhausted.  We often don’t have the strength or energy to cook meals or to clean our home.  Some of us with young children don’t have the energy to play with them like we used to.

If married, we also grieve the relationship that we used to have with our spouse.  Instead of being romantic, our relationship sometimes turns into that of a patient and caretaker.

Some of the things that I grieve personally are: not having the energy to do everything I want to get done in a day,  being able to drive somewhere without getting completely exhausted,  being able to spend time doing fun things like minigolf or going for long walks,  being able to have company over for more than three hours without having to lay down,  being able to go grocery shopping,  not feeling like I was a burden,  being able to drive seven hours up to Maine to visit my family.

What are the things that you used to be able to do that you’re no longer able to do? How does that make you feel?  Have you taken the time to grieve the things that you have lost because of your chronic illness?

Feel free to share this with anyone you know that could benefit from having some support and encouragement, and someone to come alongside them in this very unpredictable journey.

 

In spite of my illness,

Robin

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12 thoughts on “Grieving The Loss of Who You Were

  1. Dear Robin,your take on fibro that i was dignosed with in 2001 was very well put .I could never put it on paper or explain it to friends,cause i still cant believe fully what i have been dealing with .I have other conditions that are amplified by fibro,too much to list.At 68 it has only gotten worse over the years and drugs and acceptance have gotten me thru.Since 2002 i went fro 50 hours a week in body shops gradually down to 16 and last worked last 4 of july in a meanial job at a grocery store at minimum wage. I really wanted to go out with “my boots on” but could barely get out of bed and have had little to no social life .I take less than the prescribed amt of RXs so i dont feel mentally wiped out.Like you i can barely shower or sleep.now esp. in am.I read several books and 1 by Thich Nat Hahn that suggested accepting problems that cant be changed and making them part of who i am.This has helped so i ”expect nothing so i wont be disapointed”which sounds bad but it works for me.I am working on gettig all the mercury out of my teeth ,watching what i eat ,going organic and been a vegetarian the last 7 months.The results are minimal and dont seem to be worth the effort.Lyrica and Cymbalta dont work anymore..and being a man i dont want to feel like i am wimping out on life.People still dont know what fibro is and i refuse to explain cause i feel like a whiner so i just tell people ”google it”..I am on other fibro and illness sites and put my 2 cents in on occasion advising others to check on epidurals of aristospan 3 that i got in 2002,that were mainly meant for DDD. and other pain and that mad my double carpal and broken facet bone and daily migraines totally bareable.Healing is not in my vocabulary ,enduring is.I will be trying to keep up with this site which will be an effort as its increasingly difficult to sit in front of this lap top.God bless and keep up the fight Robin.~~~~~~~Tommy -Woodstock N.Y.

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    1. Tommy, I’m so sorry that any of us have to suffer, it seems your journey is more difficult than mine. Be proud of every thing you’re able to do. Baby steps – big wins! It’s sad to me that we have to join groups to stay in community, but I’m also grateful they are there. Don’t give up!!

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  2. I would just like to thank you for being able to put into words that whuch most of us are unable to. With a little luck, and perhaps some sharing of this to others – perhaps there might be a few who read it and have a spark ignite leading them to understand.

    Not just those who interact with we who are chronic illness sufferers, but chronic illness sufferers themselves.

    I say this because, as a chronic illness sufferer, I have had fibromyalgia for 22 years now, I have been through it all. I think a person has to learn a lot about life and disappointment when they become ill. Over time though, if you don’t learn to grieve the loss of what was once your life, you can’t move forward and learn to find hapiness in what is now your life. It may not be – okay, it isn’t the life you planned for or wanted – but it is nonetheless your life.

    Regardless of it not being what you planned, there is a life worth living as it is. We have to grieve our past life and let it go. It doen’t mean we will quit missing it, but like a lost love one – life goes on after they are gone. Same for our life before illness – it is gone and is not coming back.

    We need to start over and rediscover who this new person is. What are her interests, what are her strengths? One I personally examined my interests and strenths, I deleloped a whole new life. Now, I feel as if I have had 2 lives. Dramatically different lives. I am nearly almost thankful that my life that was – was sidelined. Notice I stop short of being thankful for gaving been given a life of chronic pain. But, because of it and because I had to reinvent myself, I have another chance and I am thanful for that.

    I think that more chronic illness sufferers should be urged to take steps to embrace their new life and find hapiness in it

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  3. Robin, I was only diagnosed with fibromyalgia about 4 yrs ago. I have tried to grieve the person I was and the things I cannot do anymore, MANY times. I’m struggling not to grieve over and over. I feel trapped in my own body. I also have multiple discs that need to be fixed in my neck and back and am terrified of how recovery may be with fibro. The last surgery I had was simple wrist repair and it floored me. Sorry I’m rambling now. I guess my main question is, how to fully grieve the old you and put it behind you?

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    1. Hi Melissa, Like Robin said, grieving a loss is a process and we all do it differently. I am not certain that it been be done quickly. Even though 4 years seems like forever and you are anxious to move on, it is still a process of acceptance that things are gone and having found joy in what is now your life. It won’t be joy in the same things because you can no longer find joy in things you can’t do.

      I am obviously no expert, but I have experienced this first hand. In my experience, my ability to get over the loss of my previous life was aided by learning to do new things and have a new life surrounded by those new abilities that I could do even though I have fibromyalgia.

      For many, and I am in this group, sewing and quilting are great hobbies that give you something to do to keep your mind off of the pain and also give you something that you can feel pride and sense of accomplishment in.

      So, perhaps a key to moving on is to not focus so much on the emotional moving on so much but focus on what you can do as a hobby. Try different things that you find interesting until you come across one that holds your interest. Start with a small project that is easy to make and let your interest lead you to what you like. Don’t worry about anything but just letting your mind become involved and interested.

      I think that once you find some joy and a sense of purpose in your new life, you will be able to let go of the past one.

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  4. Hi Robin, Thanks for sharing your experience and helpful information about FM.I was diag about 3 years ago. Then it is hard for people to accept that a guy can get FM, because it was mostly women who get FM.
    It would be great to keep in touch with you and share some FM war stories. LOL. Keep up the fight and thanks again for sharing your journey. Bill

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  5. I’m taking CPE (certified pastoral education) to be a chaplain – this is my second unit… in the process of doing one of my verbatims for class… the conversation came to talk about this exactly…. that I was grieving my former self. I don’t personally have fibromyalgia (far as I know) …. I do, however, have a really bad, degenerative back along with other stuff that followed suit after that now (ie: diabetes, weight gain, fluid, hypothyroidism…. blah blah blah)
    And now that I’ve come to fully admit outloud that I AM, infact, grieving myself… my old self… that didn’t have to think in advance about point A and point B and how I feel between and when do I get to sit down…and am I able to do this without pain, probably not…but let’s try it anyway etc.
    I miss my old extrovert, social butterfly, active self….. ok, so now… how to deal with that.
    For me… still trying to move, get out there, even if that means WalMart, grocery shopping, going ANYWHERE with my husband and doing stuff, MOVING AROUND if even a little bit, also doing my CPE to be a chaplain… just taking one day at a time.
    I wish you all the very best with everything you all go through from day to day!! God bless you.
    Robin, I’d love to talk about a guest blog on my page someday maybe!! 🙂

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