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Episode 18 – Grieving The Loss of Your Past Self

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The Cycle of Grieving a Chronic Illness by Misti

Episode 18: Grieving the Loss of Your Past Self

            What makes us who we are? What gives us our identity if we were to describe ourselves to someone else? Family, friends, hobbies, work, sense of purpose. Some of these are just a few examples of how our identity is shaped. And once you’ve gone from a “healthy” person to a “sick” person, and are unable to do things you once were able to do, suddenly you may feel lost. Maybe you’re someone who lost a relationship due to a disability or chronic illness. Maybe you’re someone who has been dancing or painting or playing an instrument since you were a child, and now due to a body that is unable to cooperate, you are no longer able to do those things. What about that career you’ve been dreaming of and preparing for since you could remember and now are unable to pursue due to health reasons? What now? Who are you now? How do you go about figuring out who you are today, with these new circumstances? Allowing yourself to grieve for your past self, is a really great place to start. 

             Our medical teams do their best to give us the information about our diagnosis and our treatment plans moving forward, but what about how we feel emotionally? We don’t talk about that side of our health as much, but it is just as important as mental and physical health. 

When a loved one passes away, we physically see and feel that loss. Someone who was once there is not there anymore. The grief cycle, as identified by Elisabeth Kubler-Ross, are tools that help us identify what we may be feeling. The five stages of this cycle are:

  1. Denial
  2. Anger
  3. Bargaining
  4. Depression
  5. Acceptance

With those tools, we are able to break our feelings down, and then we are able to process. But what do you do when you feel that sense of loss, but there hasn’t been a physical death? Does the grief cycle still apply?  Absolutely. When we lose a core piece of our identity, whatever that looks like for you, it can cause us to fall into a mourning for our lost sense of self just as we would for someone who physically died. Allowing yourself to acknowledge those feelings, when you may be the only one who knows what is going on is such an important part of the healing process. What could the five stages of grief look like as it applies to loss of sense of identity? Well, it could look something like this. Using myself as an example and elaborating on what I shared on today’s episode, I used to be a runner. “Being a runner” was part of my identity or my “past self”. When I had my largest health crisis episode to date, it was during an actual race. My heart rate got stuck in the 200’s around mile 8 of a half-marathon, and I couldn’t get it to come down. I couldn’t breathe, and I was shivering like I was cold, with goosebumps radiating up and down my lower half of my body, even though I was sweating. I knew I had hydrated properly, I knew my nutrition was on point, as I had run several races before, in the same conditions. What could it be? I couldn’t figure it out. I ended up walking the rest of that race, finishing it with the help of a friend who didn’t leave my side. But it was one of the most difficult races of my life. My heart rate didn’t come back down to below 100 bpm for over 24 hours, and then what followed was an intense episode of fatigue that I had never experienced before. It lasted for 6 months. After many tests and doctor’s appointments, I was diagnosed with Dysautonomia, Postural Orthostatic Tachycardia Syndrome, and Inappropriate Sinus Tachycardia. I will never forget the day the cardiologist looked at me and said, “I know you came here looking for answers, but also to get cleared to run again, but I can’t sign off on that right now. You need to focus on healing and learning what your new normal looks like. We will revisit it in a few months to see if the treatment plan is working and go from there.” I remember arguing with him. Telling him that the results were wrong and that there had to be a better explanation that would allow me to adjust something or take something that would allow me to get  back to a sport that I had grown to love so much. I didn’t realize it at the time, but I had gone through the first three stages of grief sitting right there in the office with him. 

What followed, was an immense depression that lasted almost another 6 months. At my follow up with the cardiologist, I was cleared for walking. The medication was working. I was feeling a little better. Structurally, my heart looked strong. But wait? Walking? Did you say walking? I am not a walker, Doctor, I am a runner. I run. I just haven’t run in a year, but I will run again. What else can I do? There must be something we haven’t tried yet? Anything. And just like that, I was thrust right back into the first three stages of grief yet again. 

            Fast-forward another year, and I have just slowly started to jog. I require way more recovery days, in between those bursts of exercise and oftentimes, there are other symptoms that get triggered as a result of me trying to push my body to find that old sense of self. It quickly reminds me that I am no longer that girl, and the stages of grief come creeping back in. Some days I experience one or two stages, other days it’s more. I have days where I accept that this is my new normal, but I also keep my goals in front of me. I focus on what I am able to do, and that is helping me slowly let go of my old self and allow space for this new version of me. I may not be here by my own choice, but alas, here I am and I will make the best of what I am able to. I now focus on what I like to call, “ The 5 stages of re-creating me.” 

They are:

1. Let go of my old understanding of things, by focusing not on what I am no longer able to do, but what I amcapable of doing. 

2. Revisit old goals. What were some things that I was interested in as a kid, or am interested in now? This is a great place to pull new goals from. 

3. Breakdown those goals into smaller, more manageable parts that I can still do even on my tougher health days. 

4. Evolve my support network. Build new relationships within the chronic illness community, and cultivate deeper connections with those who love and support me. 

   5. Learn that my new normal is always changing, and allow myself to experience all of the emotions that come and go with that without attachment to any outcome other than being the healthiest  version of me that I can be. 

Allow yourself to grieve and know that this journey looks different for everyone. We all have good days and bad days and everything in between. We move through it at our own pace.  Those emotions you’re feeling, they are a part of it too. And when or if it gets too heavy, reach out and ask for help. You have a community that supports you, is cheering for you, and is grieving right alongside you. 

You aren’t alone. 

xo-Amber

@theautoimmuneadvocate

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