"Suffering the Slings and Arrows of Outrageous Fortune"

I have been working on my book about living with chronic illness and am back to making progress after taking a bit of a break. I would like some input from you, if you are willing and have it to give.

Today I am thinking about the grieving process that comes along with any traumatic event – like facing a chronic illness. I have previously posted about the grief triggers I have experienced and have been pretty open about the fact that the first couple years into the journey of living with EDS were pretty rough. It is much better now that time has mellowed the grief, but the grief is always hovering just under the surface.

I won’t share my thoughts on grief and grieving here, as I have written ad nauseum about it in the past! If you want my thoughts on the grieving process, just click on the embedded links to go to posts where I have written at length about it.

I would like your thoughts on your chronic illness experiences with:

The 5 Stages of Grief

  • Denial
  • Bargaining
  • Anger
  • Depression
  • Acceptance


  • Fear
  • Guilt
  • Relief


By ‘thoughts’ I mean I would love to have a paragraph or two  from you that I could incorporate into this particular chapter. Anyone with chronic illness is welcome to share, it doesn’t have to be EDS.

 (If you comment, be aware that I possibly may incorporate your comment or a portion of your comment or the general gist of your comment into my book.  Also, if you would prefer to contact me by email instead of leaving a comment on this post, feel free to contact me via the Contact Me form on the side bar; you can also leave a comment on my facebook page. I will try to contact you if I do use your comment, but I cannot promise to be able to do so – consider this your notice. I appreciate your help.) 

Comments on: "Thoughts on grieving loss in chronic illness" (6)

  1. I was disabled from EDS long before anyone worked out what was wrong. As my pregnancies triggered the disabling aspects, there was always the assumption that it was not permanent – that I would get better.

    I have been diagnosed for one year, and been disabled for five. I was elated when I received my diagnosis – we had already figured that it was forever as the years went by and things gradually got worse. Once I had a diagnosis, I could receive help (like a state funded wheelchair), so in my case a diagnosis has actually improved my life, rather than taken from it.

    I feel as though I have accepted that I won’t have any need for retirement plans, and that anything I want to achieve, I had better get to soon. I feel as though I have accepted the disability and the illness… But I wonder sometimes – were things so gradual that I didn’t get to grieve properly? Will I crash at a later date? Are my feelings being bottled because people expect you to not worry about “maybe”, and I had a “maybe” for so long…

    I feel as though I have accepted yet I know I haven’t grieved… I wonder some days what the future holds for me emotionally.

    • I know of many people who have had similar experiences to what you have experienced. When you have lived a life time of being dismissed and blown off and labeled nuts, getting a real diagnosis is a blessing. It is hard to grieve a blessing. You might yet crash into grief, but everyone experiences the grieving process differently, so moving quickly into acceptance with no grief may be perfectly ok for you. If you do end up grieving, just go with it.

      Thanks for sharing your thoughts on this – I know this topic is really emotional for a lot of people.


  2. I am very interested in knowing more about your book and thinking. My nephew has this disease, among others, and I am terminally ill and explore the concept of livinglydying – which is different and yet a very parallel path to having your life constricted by a chronic illness. Many of us with advanced cancer are trying to work with researchers to make our disease into a chronic condition. But these catagories all put us in a dicey situation with living fully and well. And being visible in a society that isn’t good at seeing what isn’t very concrete. I will enjoy tracking your learnings!
    Marcy Westerling

    • Thanks so much for commenting. I am working hard on my book – I have no idea where the path leads but I am on it until the path ends!

      Your concept of livingly dying is fascinating. You are right that chronic illness faces some different challenges, but it is all interconnected – and I absolutely believe that these challenges mold us into more loving and compassionate people.

      I wish you and your nephew the best!


  3. Donna said:

    I have suffered from the effects of EDS my entire life (I just turned 40) with chronic pain, dislocations, subluxations, sprains, organ prolapses, difficult surgeries (had to have a hysterectomy because of uterine prolapse and became anemic because of blood lose due to stitching being like ‘slicing through butter’), scoliosis, ibs, terrible bruising, tmj, migraines etc…

    I had a teacher once take me into the hallway (in 8th grade) and tell me “if I had a daughter that was as sick as you, she’d be in the hospital!”. No reason, other than to make me feel worse. As if I was faking it. I was doing all of my work and always made the honor roll (despite also recently being diagnosed as adhd).

    When I got my diagnosis a couple months ago (after being mis-diagnosed as ‘only’ having fibromyalgia), I had a lot of different emotions. One was definitely anger. I was angry at all of those people who made me feel bad for feeling bad my entire life. I’m tearing up again typing that out. Partially because my children have it too and are dealing with much the same thing, but at least now we have a diagnosis. No child should have been treated the way I was and I hope someday they never will be. I cried as I told my friends and family about it, remembering the times people would give me a hard time for not feeling up to doing things. I questioned myself. I wondered if I really was just lazy or a whiner. I had no idea how incredibly strong I’ve been, considering the circumstances.

    Then I was was upset. Fibromyalgia is chronic as well and it sucks, but they say it does no actual damage to your body. EDS does. Subluxations and dislocations cause arthritis and the possible need for joint replacements. I’ve had to go to cardiology and I still need to get a dexascan and possible brain and spine/neck imaging. I’m worried that I’ll be disabled in the next few years and unable to support my family. Before, I thought I’d be able to trudge through, no matter what.

    I was made upset again and again as I told my pcp and my rheumatologist about my diagnosis and got the same reaction from them both: they don’t bother diagnosing or even raising the possibility of EDS. There is no cure for it, so why bother? OF COURSE there isn’t a cure with attitudes like that! How will there ever be adequate research into this condition if it is underdiagnosed because of fools like that? I’ve switched doctors, obviously.

    Then I was relieved. I finally knew what was really going on. Nothing else had ever fit. No matter what I had been told. Every single symptom that was ever unexplained is explained by EDS. My father died when I was only 7. I’ve heard my entire life what a hypochondriac he was. My mother doesn’t have it. I’ll bet anything that he was suffering the same way I did and was only searching for an answer. I wish he was still here so I could hug him and tell him he wasn’t crazy. I’m glad I can take my kids to the best doctors at the connective tissue clinic here in Cincinnati and can get ahead of this and give them the best quality of life possible. Hopefully they won’t suffer the way I have with proper care. That will make up for a lot.

    • Thanks for sharing! There are so many emotions that come along with an EDS diagnosis. It can be like a roller coaster that goes on and on! I am glad you got a diagnosis and are working through everything that comes with it. Your kids are very lucky to have you: you know what they are going through and you will be able to help find them the best care. There is so much negative from the past, but knowing we can make it better for the next generation is a comfort.Take care of yourself and hang in there!

      Thanks for commenting!

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