Anyone know of good book dealing with grief from chronic illness?

Discussion in 'Fibromyalgia Main Forum' started by connieaag, Nov 6, 2006.

  1. connieaag

    connieaag New Member

    My daughter who is 13 has CFS/FM and is in counseling to deal with issues she is experiencing at a young age because of this DD. The psychologist explained to me that she is actually grieving because she lost something that meant a lot to her (competitive swimming) at age 11 and it was not by her choice as when kids drop out of something because they want to. She had to.

    Does anyone know of a good book (for me) that deals with non-death related grief such as this? Thanks!
  2. Lendy5

    Lendy5 New Member

    Hi Connie - I am so sorry that your daughter has this awful illness but here is a list of books that I have found to be useful.

    My favorite is "Fibromyalgia For Dummies" because it is very easy to read but there are some other great one's out there.

    "Fibromyalgia & Chronic Myofascial Pain: A Survival Manual, 2nd Edition" Author: D.Starlanyl and

    Fibromyalgia and Chronic Fatigue Syndrome 7 Steps to Less Pain and More Energy, by Fred Friedbert.

    Hope this helps a little and wishing you and your daughter best wishes.


  3. connieaag

    connieaag New Member

    I have read those and many more that address the illnesses and treatment ideas. I guess I am looking for a "loss" specific one that deals with illness and experiencing grief, that is written for parents or caregivers,and how they can better relate and help. Does that make sense?
    [This Message was Edited on 11/06/2006]
  4. Jillian40

    Jillian40 New Member

    Hello -

    My counselor just recommended two books to me:

    1) The wounded storyteller
    2) At the will of the body

    Both are by author, Arthur Franks.

    I am guessing that they are written for adults, but I haven't read them yet. I just ordered them online.

    I would suggest talking to a librarian to get a suggestion
    for a book for her. I am just sure that there are a few

    I send prayers your way as your little one has a lot
    on her plate at such a young age. Her likelihood is
    good for at least partial recovery due to her age
    and the advances that we have made in the past 5 years
    of so with this illness.

    Love and Prayers,

  5. connieaag

    connieaag New Member

    I will look into those two you mentioned. I want something for myself and how I can better relate and help her through this grieving.

  6. mezombie

    mezombie Member

    Carers & Caregivers
    How do I help my spouse with CFS/FM? Q&A, Our Way - CFSupport

    Living with CFIDS: A Family's Struggle Searching for hope Moir / CFIDS Chronicle
    Living with CFIDS: CFIDS from a Husband’s Point of View Stout / CFIDSLink
    A Letter to Friends [about my weird illness] Antenen / CFIDS Chronicle
    The Open Letter To Those Without CFS/Fibro... FM/CFS Foothold
    A Letter from a Friend who Suffers with chronic fatigue syndrome

    Sleepydust Online Video for the friends and family of ME/CFS/PVFS sufferers.
    CFS Caregivers: Resources for Caregivers Greg Ross
    Family and Friends CFIDS Association of America
    For Those Who Care
    Tips for Parents
    For Parents of Sick and Worn-Out Children Frank Albrecht
    Friends and Family Elaine Katz
    Friends & Family - National Fibromyalgia Association
    When A Loved One Has Fibromyalgia, How Can I Help? Jim Kuhn
    To Love, In Sickness And In Health Lisa Lorden
    Guide for Relatives and Significant Others of Fibromites We Are FMily

    How to Kill a Sick Friend Sue Klaus
    My Son's Strength Terry Woster, CFIDS Chronicle
    National Family Caregivers Association NFCA
    Thank You for Caring: A Tribute to CFIDS Caregivers The CFIDS Chronicle
    The Caregiver "Road Trip" Lori Flaherty, CFIDS Chronicle
    The Challenges of Parenting a Child with CFIDS The CFIDS Chronicle
    To My Husband, After One Year Robyn Pollman
    Well Spouse Foundation WSF
    What your Friend or Family Member with CFS Needs You to Know Sue Boettcher
    When Husbands are Caregivers Rest Ministries

    I just copied and pasted this from the Northern Virginia Chronic Fatigue Syndrome Support Group'swebsite. I'm dealing with a bit of a crisis right now, so I don't have time to edit it.

    I hope this will help you. I recommend checking out the National Family Caregivers Association, for starters.
    [This Message was Edited on 11/06/2006]
  7. netnut

    netnut New Member

    There is a book out there called "Beyond Chaos" written by a husband about his struggles as the caregiver/partner of a woman with cfs/fm but it is good for any chronic illness.

    It talks a lot about the struggles he goes thru feeling unable to fix what is wrong and things like that. It also has some exercises for people reading the book to do.
  8. morningsonshine

    morningsonshine New Member

    Very good thread!1
  9. Mini4Me

    Mini4Me New Member

    I'm so sorry your precious child is suffering with this DD! She must be a brave child indeed!

    I know the kind of book you are searching for, because I myself am searching for the same!

    If you google The American Pain Foundation, you may find some interesting info there. Also, can she join a support group for children who suffer from chronic pain?

    My heart goes out to you and your family!
  10. connieaag

    connieaag New Member

    It's just hard for all family members to deal with chronic illness. I think the ups and downs are the worst. Just when things are going well and we as parents feel like we can regain some normalcy again, there is a big set-back. It is hard enough for the patient to cope psychologically, yet alone seeing someone you love, no matter what age, have to give up so much of their life. It may be worse when it's your child and they keep have to reprioritize their hopes and dreams. Life isn't supposed to be that way. No matter how much counseling the BIG question is "How do you support them except with unconditional love?"

    Thanks for the comments.

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