Who’s Hiding The Blueprint On How To Live Life After Chronic Illness Sets In?

Architect Woman With Plan

Photo by: adamr

LIVE is the key word. Who is in favor of finding a blueprint on how to exist? NOT ME. I’m not shy expressing my desire to find a blueprint on HOW TO LIVE!

If you are living with a chronic illness, and we have interacted on some level, I may have bombarded you with a loaded question:

How do I live a life like this? What’s the blueprint?

I have heard the following responses (forgive me, I’m paraphrasing) …

“There is no blueprint!”

“Just live your life and it will work out.”

“I wish I had the answer.”

According to the CDC’s chronic disease and health promotion webpage, 133 million Americans have at least one chronic illness.

I will add myself to the list. Let’s go with 134 million! I have to error on the side of ignorance because I don’t know how this data is collected.

Side note: If you can help me understand how “Disease Surveillance Systems” work, I’m all ears!

Surely someone out of 134 million people has found a way to FLOURISH and SUCCEED after moving past grief and acceptance.

I have been in this chronic illness game for 8 years. It has taken me time to move through Elisabeth Kübler-Ross’ Five Stages Of Grief.

Another side note: Last year, someone I didn’t know, tongue lashed me with this beautiful phrase…” You’ve had this 7 years, and you haven’t figured it out?”

I thought I was “balancing” between depression and acceptance with more weight being placed on acceptance.

However, I had a bit of a setback. I recently had a doctors visit that exposed a wound. He expressed I am experiencing an “appropriate” emotional response to functional limitations. He proceeded to tell me that I am wearing a mask which projects everything is OK! When that mask is penetrated, it’s exposing my deep sadness. When I’m asked about how this condition affects those around me, I break down and shed ugly tears! When I was asked to talk about my limitations, the flood gates of emotions poured out! This doesn’t actually sound like acceptance, does it?

I’ve had this chronic illness for 8 years and data would show that I am chasing symptoms at this point. The doctor at this appointment eluded that chronic vestibular symptoms may be my life long fate!

I got home and paced around for a bit and then something happened! I started recapping the day, and I got ANGRY! I started air boxing and yelling my head off! I will share with you the clean version…

“HOW THE HELL AM I SUPPOSED TO LIVE LIKE THIS FOREVER!”
“Do you know what it feels like to live like this?”
“Do you know what it feels like to have people question something they can’t see?”
“Do you realize how close I came to ending this?”
“I’m going to punch this wall!”

Poor bug! Thank GOD for him. I went to punch my fist through the wall, and he grabbed me! He snapped me out of my rage with a stern, yet concerned tone: “Your going to brake your hand!”

For some perspective, I’m not an angry gal! I have a pleasant disposition. I approach everyone I meet with a general excitement. So this angry outburst is not usual for me!

A few days after this incident I started to gain some clarity! I recalled what the doctor said in our first meeting. My joy and vibrancy for life is still a real part of who I am, and chronic illness did not remove those qualities from within me. What’s hidden above that layer is deep pain and loss. Right above that layer is what I project to the world. With time, I began to see this as genuine good news. I have a desire to grow and transform regardless of deep pain and loss.

This is a situation where it’s OK to fake it until you make it! Deep down on some level is your true self. Deep down is your happiness, love, passion, and it’s “normal” that your pain and suffering are suppressing those beautiful qualities! At first I was concerned that my current display of excitement and positivity was a fake projection because on some level the sorrow and grief are still present. The doctor confirmed that is not the case, which was an enormous relief.

It’s OK to claim who you want to become despite the sorrow and grief of your chronic illness. This may allow you to spend time in the present moment reclaiming the beautiful parts of who you were while cultivating who you will become.

So, who’s hiding the blueprint? I will speak for myself…  ME!

I am looking forward to working with a chronic illness and disability therapist in hopes of rebuilding my “psychological system” so I can  redraw my life blueprint!

Much love,
Marissa

P.S. Hang in! It’s one foot in front of the other. We got this.

References:
CDC- Chronic Disease Prevention and Health Promotion
The 5 Stages of grief and loss 
 

3 comments

  1. You have really hit the nail on the head with this latest post Marissa – and something that I am regularly asking myself, especially when new symptoms appear or when things get worse. We all definitely have to go through a grieving process of who we were before illness, but then trying to build a new life and accept the person we have become.

    • Rhiann! It’s such an awkward position to be in. This must be how a new mom feels. New mom’s are not given a handbook on how to be mothers, and we are not given a handbook on how to build a life after chronic illness sets in!

      Much love,
      Marissa

  2. Marissa, We learn to walk one step at a time and the same principle holds for rebuilding our expectations when chronic illness strikes. If I may plagiarize my blog: “Triumph lies in adapting our dreams to fit our realities and stretching our realities to accommodate new dreams.” I truly believe in the power of aspirational thinking. When I started my blog, I put forth the best of me, the self I wished to be. Sometimes, I felt in complete harmony with that person; other times my writing was more aspirational. Step by step, I walked toward the best of me. So reach out for the best of you, surely within arm’s reach, take days of success and moments of failure, and always believe. I love you girl. -Pam-

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