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Living with the Shame of Chronic Pain: Fibromyalgia, M.E and Invisible illnesses.

Updated: Aug 6, 2021

Coping with any chronic illness is intense, but the when it's an invisible illness as well, the shame dial gets cranked right up.

Our defences and reactions become far greater, as we're often disbelieved, questioned and asked to prove our pain in the midst of suffering and so this blog will often be more told through the veil of a Fibromyalgia warrior.

Fibromyalgia is a challenging one to navigate.

We have all heard about the intense physical pains, brain fog, organ malfunctioning, nervous system dysregulation, muscle spasms, depression, anxiety, I.B.S, chronic fatigue and joint pain but nobody really talks about the impact on our sense of identity and self-worth.

Not only do we live through a tornado of life altering physical issues, but we have had to endure the impact this has on our mental and emotional wellbeing as well.

Our whole identity is affected and the judgment of others often evokes such gut-wrenching shame that it can only be understood when you've experienced it first-hand.

This social judgement imposes such unrealistic demands on our capacity to do things that we are constantly battling against the guilt and shame of it all as well.

· You should be working more than you are, otherwise, you’re not a valuable, contributing citizen.

· You should be exercising using harsh gruelling routines, or you’re lazy.

· You should be eating better, otherwise you’ll be fat and this will be your fault.

- You should be devoting more time to your friends and family, otherwise people will stop loving you.

The worst part is that these social judgements are not only coming from the outside but from our now internal dialogue as well. These thoughts have been repeated so often that they have now become part of our subconscious thinking and run in the background when we are too tired to control them.

Scientists have estimated that we spend 95% of our time in these subconscious thought patterns and so without us even realising it, we are contumely living in fight or flight mode. Being attacked by our unconscious thought patterns.

These create such deep feelings of shame and unworthiness, that they perpetuate the cycle of abuse that keep us feeling stuck!

Haven't we suffered enough?

If we want to reverse these unhealthy thought habits, we need to create a new internal dialogue through meta-cognition or becoming aware of this internal dialogue.

But how?

Step 1- Start by asking the right questions...

  • What is causing the shame to occur?

  • When do I feel unworthy?

  • Are there any repetitive thoughts that keep coming up?

Step 2- Becoming aware of your habits

If you’re a go-getter / action orientated personality like me, navigating the storms of uncertainly, incapacity and confusion can be extremely daunting. This can be not only from the standpoint of frustration at our inability to act, but at our struggles to find a place of acceptance. The question is, how can we accept an inability to function when we so desperately want to do so much?

I noticed shame occurred, when I was felt invaluable or when I couldn't act or perform in the ways I had previously equated to success. I noticed that I felt most unworthy when I was doing tasks not aligned to my strengths and that the repetitive thoughts playing on loop are always.

You're a loser

You're not loveable

You're not valuable to society.

Such harsh inner criticism always playing in my internal dialogue, and keeping me stuck in the cycle of abuse. Except now I was doing it to myself.

Step 3- Acceptance

Acceptance for me was the hardest part!

There was always so much I wanted to do, but the more I resisted the more I couldn’t find the energy and focus to do anything. At times, I wanted to literally scream at the frustration of it all. The longing for something that was once so achievable was now so out of reach and keeping me stuck.

I had set such high expectations for myself that I couldn’t bear the thought of surrendering to the act of not fulfilling them. This belief was the thought that perpetuated my continuous cycle of resistance.

I discovered, it was most definitely the shame associated with my malfunctioning body that was keeping me stuck through a resistance to accepting what is. It kept pushing me through unrealistic limits that would be impossible for Usain Bolt to reach but I had built a life on the notion of success as worthiness and didn't know how to let this go so easily.

The thought of being nothing, the thought of being trapped and imprisoned in this body without the external validation felt like hell to me, but I knew I had to let go of this ideal and start bringing these thoughts into the light to heal.

I started asking further questions:

Why is my attachment to success so strong?

Why am I clinging onto these false ideals of external validation as worthiness?

What was it I was truly searching for?

When I realised the answer was love. I could learn to go straight to the source rather than going around in circles to get there.

And so my journey back to myself and back to freedom began.

I was diagnosed with Fibromyalgia in 2015. It had been six years that I had lived in this mental and emotional state of hell. Each day building these negative neural pathways that were keeping me under.

I began using mindfulness tools such as yoga, meditation, N.L.P, guided Meditations, referring and hypnosis and began creating a new system based on the Neuroscientific evidence on transformation that I was discovering.

The tools were incredible! They changed my life.

I couldn't believe that I was waking up to not instantly surrendering to the thought of pain and destruction, but even though the thoughts still lingered, my mental models had changed.

I was building new Neural pathways and creating lasting habits. It might sound weird but I now view Fibromyalgia as a gift.

It taught me...

How to become less attached to my physical world. How to love myself unconditionally and how to find a deeper connection to love source energy and my higher self.

My greatest lesson is this…

When we create attachments to any material things, (Including our health), we become unhappy. In the past, at the first sign of a flare up, I would battle and push against my limitations causing great resistance to occur. This would exacerbate my symptoms.

Now- in this new state of self-love and acceptance I use these simple steps:

Step 1- Start by asking the right questions...

Step 3- Acceptance

Step 2- Becoming aware of your habits

Fibromyalgia may mean our actions are limited but it can also serve to make our dreams bigger by helping us reach our higher selves.

1 Comment

Hi Kari,

Thank you for bringing the light in my life! This article is so touchful! There are so many people living in the shadow, fearing to be open and talking about the pain that does not leave them feeling free. Thank you, Kari!

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