grieving & chronic illness (this is what it feels like)

I have moved this post to my new blog, as I no longer use this one, and apparently google penalizes you for duplicating content.

Grieving & Chronic Illness (this is what it feels like) was my first attempt at expressing the grief that comes along with being sick forever. I wrote it while still in the especially difficult space of pre-diagnosis, before having a name for the changes that were happening to me, and before finding the spoon theory and chronic illness support communities. Writing this led me to those support communities, so this piece holds a special place in my heart. You can find it here.

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8 Responses to grieving & chronic illness (this is what it feels like)

  1. Hanna says:

    thank you.

  2. Judith Mackenzie says:

    Thank you for posting this. I have lived with ulcerative colitis for 18 years and much of what you have written here resonates with me. I do everything I can to be as well as I can be and live my life
    There are times when this disease can be absolutely random and cruel and it completely shrinks your world, for sure.

    • niki says:

      Judith, thank you for reading, and for sharing. I’m glad that these words resonate, and I’m also sad that they do. I wish so many people didn’t have to go through this.

  3. Drea says:

    Thank for posting this. Thank you for finding the words that I have been desperately searching for months to explain how it feels to morn the loss of myself. I kept getting sicker and gave up on doctor years ago. I gritted my teeth and kept pushing. Losing my job due to abscences, dropping out of school for the 6th time because I ended up ok the hospital. It was killing me and it was still slipping through my fingers. My resentment only made me push myself harder and I just kept getting sicker.
    Nine months ago the tattered remains of my promising life came to a screeching hault. Literally. The car accident injured nine of the disks in my spine and the trauma of that accident exasperated every issue I already had. Since the accident I couldn’t lie to myself anymore. I started doing what I do best, fighting. Fighting for my health. Now I have amazing doctors. I was diagnosed with Fibromyalgia back in April and with Arthritis today. Even with a second diagnosis they needed more tests because they don’t explain all my symptoms.
    My life revolves around my health now, as I am sure yours does too. Therapy, physical therapy, injections, medications, more medications, check ups, more tests, more medications, acupuncture, the list goes on.

    I went on a page long tangent there… I just wanted to say thank you, from the bottom of my heart, for giving me the words that I have been searching for.

    • niki says:

      Drea, I’m so sorry to hear all that you’re going through, and I’m glad you’re finding healing strategies that are working for you. I really appreciate everyone who has shared their stories and their struggles. It means a lot that this resonates with so many people. Thank you so much for sharing.

  4. April Dawn says:

    Thank you SO much for writing this – and it is so perfectly timed for me. I am not able to be as articulte as I used to be, but your words could be mine, they describe so much of what I am now going through – I haven’t reached the happier place yet – I have been suffering severe chronic pain and illness for over a decade – it started when I was about 30 and I am 44 now – it is still horrible – worse in some ways – better in others – but disabling body, mind and soul. I have chronic lyme disease (which most doctors don’t acknowledge as existing) and many other diagnosis – and very little in the form of treatments except those “not-traditional” ones that insurance doesn’t pay for and is expensive – organic specific diet, massage etc. I have been struggling as you describe ( and didn’t describe but hinted at) for so long – and so many people judge and shame me whenever I voice my situation – they minimize it and tell me that “at least I am alive, some people are dying” and to just change my attitude so I “attract” something different to me (blaming me for my illnesses). Thank you for just putting words to it all and acknowledging it.

    • niki says:

      Thanks April. I’ve struggling with health stuff for maybe the past 7 years, but only the past 2-4 have been really bad. I could push through it for years, and then I reached a point where I couldn’t. I’ve also found that regular medicine hasn’t had any answers for me, and health care practitioners (doctors, specialists) have often not really taken the time to listen or take me seriously, whereas naturopaths have been much more understanding and thorough in terms of helping me figure things out. I find managing my diet (I’m still trying to figure out whether SCD or paleo works best, but I know for sure no grains, sugar or beans) is the primary thing that helps, and yoga helps me as well–I think probably because anxiety stuff can really help or exacerbate whatever mysterious other things are going on. It’s very demeaning and frustrating when people say things like you described above. Thank you for sharing your story.

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