With chronic illness comes mourning and grieving. It is natural to have these feelings. I think we all do in the beginning and even later on. It just feels like who we Are isn’t able to manifest fully in the world. All that potential and possibility is halted…

Title: Chronic illness and grief of self
Subtext: We grieve what we were and mourn what we could have been
Image: Young woman in shadows looking down

Grieving our former selves

It isn’t uncommon with chronic illness to grieve our former selves. But I have been chronically ill for a long time. This didn’t apply to me as much when I was younger because I had pain and symptoms at a young age. Sort of had to adapt a self to fit that. However, as I got older other chronic illnesses jumped on board. And then I would grieve the functionality I had HAD. And what I used to be able to do.

Mourning what we could have been

Most definitely I used to grieve for who I COULD have been. The what if’s of it all. I had to make compromises, which were necessary, but I think about what it would have been like if I had never had chronic pain. Never had to make those choices. What would have things been like?

Image in black and white: cityscape
Text in a blue band over image: With chronic illness we mourn who we used to be: We mourn who we might have been. We grieve lives lost and lives never fulfilled.

I grieved for the loss of the life I wanted and the future I desired and cannot have.

I grieved that I cannot do the things that I actually enjoy and fulfill the ambitions that I have.

I grieved for all the potential that was there but could never come to fruition.

It felt like a loss.

It felt like I was slicing parts of myself out with all the compromises I had to make. Cutting out ambitions. Cutting down possibilities. Cutting out my wants, desires and goals. Narrowing my life down.

Sometimes life doesn't turn out the way we wanted and chronic illness can alter even the best laid plans, but that shouldn't hold you back from your future

Awareness that who I am is more than the vision I had

I don’t feel this way anymore. I am past this stage. I think because I don’t want to be in it. I just wanted to Be. And accept that I can be. And find some contentment with that.

All these could be’s and What if’s are not what actually IS. Life has a way of turning out differently than our expectations all the time. It is all twisty turny. And chronic illness and chronic pain are just one factor that alters my path through life. Many other things have as well.

There is this awareness of accepting who I am now and my current lifestyle and limitations, my current sense of self and self-identity… that lets me move within that. What possibilities, goals, desires and wants do I seek in this framework of my existence that is realistic? What are my passions? Desires? Needs? What will improve my quality of life and life satisfaction?

In a way, my view of life when I was younger was far more limited. I wanted a job I was passionate about, yes. But I didn’t think of the quality of life, well-being, or life satisfaction. I didn’t think of life and myself as a Whole. Just fragments. This thing. And that thing. And who knows if any of that would have led to any sense of satisfaction? I don’t. I just had a checklist of things I felt would make life complete. And none of it really would have.

This life is Complicated. That is one word for it. Complicated.

Health issues are complicated. Its limitations complicate things. Complicate how I manifest in the world- how I move in the world, how I pursue goals, wants, desires. But I try to adapt to that and work within it. And I find things I am capable of to make new dreams. There is nothing inherently wrong with this path in life. It is different, yes. Society has ‘issues’ with disabilities, for certain. I have meaning and purpose and many valuable things in this life. I have good friends. Good family. Hobbies I am passionate about. Things, like blogging, I value doing.

Just because a life is different and one people do not understand much about doesn’t make it bad. I just stopped thinking about all those infinite alternate realities that just never were and never will be. And I don’t even remember when I stopped doing this. But I did. And I am glad for that because it pained me to think about loss and this idea that I was in some way a Lack of what I Should be. That isn’t a way I want to think about myself.

Can your positive attitude help you achieve your lifestyle goals with chronic illness
The indestructible within
Not miserable? You must not have pain

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15 thoughts on “Chronic Illness and grief of self

  1. You are so right, Nikki. It’s hard not to wish that things were different, that you could do all the things you would like to do. Or anything that others consider normal. Some days are so bad, you can’t even do the slightest task. As I get older, other illnesses are added to my chronic migaine and it seems to get worse every day.

    Your blog means a lot to me since I know I am not alone. Thank you.

    Liked by 2 people

  2. Thank you so much.
    I really needed this today. I’ve been going through a rough patch and have been mourning my former self a lot lately. I want to move past this and embrace what is. I appreciate your words of encouragement.

    Liked by 2 people

    1. This one can take a bit of time. I suppose that differs for all of us. Took me a bit though. We just have to give it time because the impact on our lives is so insane it is hard not to grieve.


  3. Hi Nikki, thanks so much for this post. It helps me know that there is hope to pass the grief that I carry over illness and opportunities that will never be there. For me, it is not a linear thing. Sometimes I can move past the grief and concentrate on the now, but other times I slip back into mourning what isn’t. It is the same (for me) as I grieve for people who have passed. Sometimes I have moved on and sometimes I am right back in the thick of it. I think that’s ok, but I like what you say about being free to focus on what you have now.

    Liked by 1 person

    1. Grieving for someone who passed I am not sure we ever entirely get over… sort of comes back and hits us when we least expect it. Or for me it does.

      But you are right it isn’t linear. And certainly there were times when I felt like I was doing better or progressing that I tossed that grieving out the window to pursue new ambitions. But that was running from the fact I couldn’t function like I could. So… that was denial for me. I’m bad at doing that. Bit stubborn. I sure hope that one doesn’t come circling around again because, man, I learn a hard lesson with every trip into denial.

      Liked by 1 person

    1. I think you will get to where I am but I think we all get there at our own pace. And it took me, well, over two decades? So yeah some times for me to get past that stage. And that isn’t saying it won’t happen again, because it very well might.

      Liked by 1 person

    1. Mine is denial, crash, mourning. Repeat. Until I finally realized I just can’t exceed my limits, so now I don’t crash and so I don’t hit that mourning that I couldn’t do what I Knew I couldn’t Do.

      Liked by 1 person

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