Grieving the person I once was


My name is Keisha and I wanted to share a topic I felt for a while. I used that topic"grieving the person I once was.," is because I was diagnosed with Muscular Dystrophy in my early 20s. I had this whole life before, living on campus, driving on my own and just living my best life, and then BOOM! sometimes I look back like wow, things can change in an instance, you never know whats going within your body.

Have any of you felt this way? Looking back at a time before you were diagnosed with a chronic illness/disability?a


Love this topic Keisha! Bring on the emotions everybody…

As someone in recovery from an eating disorder - I think this question relates a bit differently than living with the body limitations of a chronic illness or rare disease. In one sense, I miss how “simple” things were before I started treatment. Notice, I didn’t say healthy because I 100% wasn’t, but I had rules to follow and that was that. Watch what you eat, over exercise, purge, sleep repeat. Though I NEVER want to go back to that, recovery certainly can complicate things. For years, I’ve been working on working through the trauma and underlying issues that caused my disorder - it’s no longer just about food and weight, it’s some seriously heavy emotional stuff and I am forced to confront it every single day, heck, every single hour.

So sometimes, I look back and miss when things were “simple”, when I didn’t realize I was so sick. When food was my biggest concern. When I was a “regular” kid, not someone dealing with a life threatening condition and life long mental illness.

And of course, I certainly look back to a time before food and weight even became an issue. Unfortunately, I developed my eating disorder by 8th grade but even then, I can reflect on a time when things weren’t always so heavy!

Thanks for this time of reflection (and venting) Keisha- I can promise you, you aren’t alone in this feeling!


Thank you so much for sharing that Kristen :slight_smile:

i miss doing medical transcription all day. my brain exp;oded.

Awww ok. We’re you working at a hospital?

Most days I feel like I’m over it, but then I have days where it hits me really hard. As much as I have moved on and started building a new a new life for myself that accommodates my illness, I still find myself grieving for the life I had dreamed about before getting sick. Ever since I was a little girl, I wanted to be a police officer. I got all the way to my senior year in college as a criminology major before the doctors basically told me they’d never be able to fix me and since it was clearly not life-threatening, I should be okay with that (this is after almost 6 years and still no diagnosis). I had to completely pivot my life plan so suddenly, that I never really got a chance to fully grieve the dream I lost and 3ish years later I still get these days where it really knocks me back. I’m lucky that I’m still fairly able most days, but exercising will probably always be something that I can’t do without significant pain and dizzy spells.

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Awww I can totally relate to everything you just said. I am glad you are apart of the Wego Health team and we are here to support each other.

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100% I believe that like with any other grief there is no timeline for it there is no way of knowing the process it will look like for you as with rare disease and so many health conditions there is no rule book to grief and it can be compounded as things change in your situation. i think i am consistently on a continum of missing who i was resenting my new life and being made at my self when i start to enjoy rare life as if that negates in some how who i used to be


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This also happens to family members who become caregivers, sometimes they too have to give up major parts of their lives. In some ways there’s a lot less for a caregiver to do to impact a health situation because it’s not their body or their decisions to make (except when the person with the diagnosis becomes incapacitated & then there’s a whole lot of stuff around “what would my person have wanted” here & if you’ve never had those conversations about disability, incapacity or death, it’s even harder than if you did when they were still possible)

Grief therapy techniques can be helpful (not just for deaths but for all kinds of losses & changes whether big or small) for both the person living with the diagnosis AND the people living with the person living with the diagnosis)

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Yes that is sooo true! Thank you for sharing

Sooooo true Kristen!!! :heart::heart: