This is SO serendipitous, it has to be something moving in the ether for us all to heal. A couple weeks ago I connected with a shame I didn’t know I was carrying. I was blown away by the fact that, after all the inner work I had done — some of it on the shame of my chronic illness specifically — it had escaped my awareness.
I also felt compelled to write, and so, even if it’s long, I’m going to share some of it here. I know it will help someone.
I’ve been connecting the dots between being a highly sensitive person (HSP) and chronic illness. As HSPs, we learn to suppress our true feelings, our true selves, because our depth is not welcome in this world. And this has consequences; often expressed in our physical body because the stress of the suppression affects our immune system. More on that elsewhere.
In the past several years, I’ve had multiple epiphanies revealing to me I was meant to talked about my experience with chronic illness. I never really followed through. Honestly, it terrified me. A couple weeks ago I finally understood why.
Here is my story and my most recent aha! moment.
My disease, ulcerative colitis, started at 11 years old, at a time when it was unheard of in children. The shame of the symptoms had me keep it a secret for two years. I didn’t tell anyone. At 13, I had a colonoscopy that deeply traumatized me. As crazy as it sounds today, I actually drove myself to the clinic. I felt too much SHAME to let anyone be there with me. I was left alone with a doctor — a man named Loutfi, with dark skin, thinning slicked-back hair and big glasses. Once in his office, he dismissed the nurse and asked me to get undressed. What happened next… wasn’t right.
Very few people know about this because I still feel SHAME. I’ve never shared this publicly.
A few days later, our family doctor called to talk to my mother. I picked up another receiver in the basement and spied on the conversation. He told her I had ulcerative colitis, that it was incurable and that I’d to learn to live with it for the rest of my life.
I remember the rage rising inside me. Rage like I had never felt before. One, how dare he talk to my mother and not to me! Two, how dare he presume to know what the rest of my life would be like. Then I walked upstairs and pretended I hadn’t heard what I had heard.
Suppressing my truth and my feelings was already who I was.
For the next few years, I was put on various medications. They didn’t really work, and they had side effects. Once I had my driver’s license at 16, I started taking myself to various naturopaths and holistic therapists. At some point I was taking 80 supplement capsules a day, trying various diets, including only eating boiled lettuce and goat cheese.
I still felt a lot of SHAME. Like I was a burden, complicated, less than a “normal” person. I was often met with, “Bon! Annie’s sick again.” And asking my father to pay for my treatments wasn’t easy either.
After I left home, I kept the extent of my disease and the intensity of my pain behind closed doors. Many times, I drove myself to the ER and was met with disbelief that I had even managed to get there. Once I showed up with a swollen tongue from dehydration and malnourishment.
Still, to people around me, at school, I looked just fine. I got very good at wearing a mask.
At 28, facing the certainty of death after a month-long hospital stay, I accepted a surgery I had refused many times before. Doctors removed my colon and reconstructed my digestive system. In a weird déjà vu, I took a taxi to the hospital for this life-threatening surgery — no one was available to take me. It was a horrible experience.
The decades that followed were not easy. I still live with several physical challenges and limitations. The last time I almost died from complications was in 2009 (or 2010). I’m a vibrant 60-year-old woman, filled with love, joy, and wonder (except when I’m not). I still believe my best years are ahead of me.
…
IT'S A PRETTY POWERFUL STORY OF SURVIVAL, RIGHT? So why has sharing it been so TERRIFYING? What I recently understood was that it was SHAME that stopped me from seeing myself as a SURVIVOR.
Not the shame of the child, but the SHAME OF THE ADULT who, on some deep level, wondered what kind of fucked-up person lets herself suffer like that, for so long, without asking for help? You’d have to be pretty messed up to behave that way. And REAL SURVIVORS are honourable in their conduct. In my mind, I definitely didn’t qualify.
But a few weeks ago, I understood that I DIDN'T CHOOSE to handle it that way. My behaviors were not conscious choices at all; my ISOLATION, SILENCE, SELF-DOUBT and SELF-DENIGRATION — my INABILITY to see myself as a survivor rather than a screw-up; they were the deepest, most insidious layers of LEARNED SUPPRESSION.
That’s when I knew I had to start PROUDLY sharing that part of my story.
Because those “non-choices” are not unique to me. Learned suppression is the experience of the highly sensitive, and of those of us who have lived with the shame of chronic illness.
And it all has to stop. For our sakes, and for the sake of the world.
Because the world needs our brilliant blend of depth, courage, strength, resilience, intuition, compassion, and wisdom we developed BECAUSE of our journey with chronic illness.
As much as we have suffered, we were never broken; we were being forged.
Life has been hard for us. That’s a fact.
But what if that pain had a purpose?
What if instead of making us feel like victims, it was our portal for transformation?
What if our suffering wasn’t a curse but the path on our Hero’s Journey?
What if the places we’ve assigned shame are the very places where our power lives?
It's time for us to flip the script.
THIS IS THE ALCHEMY WE ARE CALLED TO PERFORM.
We take shame — and turn it into survivor.
We take pain — and turn it into power.
We turn feeling like a victim — into becoming the heroes the world needs today.
Wow, Annie. What a powerful and harrowing story. Thank you for going so deep with us here and for sharing this. I too believe that our pain has a purpose and it's so much of what we are doing here in this corner of Substack. Honoring it all and digging out the truth behind each moment. Not so we can claim our victimization but so that we can finally set that free. I appreciate you and your journey and I'm so glad you're here in our community. Big hug 💕
Hi Nitika. I’m Rachel. You write with such clarity. Thank you for your vulnerability and courage to share this. It is very hard to have illnesses and to need help throughout the flares & episodes. I have also felt shame and felt I was a burden. I accepted this over and over, that I wasn’t a burden and that my family wanted to be with me. And let it (the shame) move on through me. Thank you for your post.
This is so beautiful Rachel, thank you for sharing a bit of your story with me. I am so honored that this post resonated and that you're a part of this community. Big hug 💕
My absolute favorite book about shame is Healing the Shame That Binds You by John Bradshaw. It is one of the older ones my clients have never heard of, and they wondered why no other therapist suggested it. Explains shame so well. Get your highlighters ready, and maybe some tissues and get ready to celebrate you. Shelley xo
Hi Nitika,
This is SO serendipitous, it has to be something moving in the ether for us all to heal. A couple weeks ago I connected with a shame I didn’t know I was carrying. I was blown away by the fact that, after all the inner work I had done — some of it on the shame of my chronic illness specifically — it had escaped my awareness.
I also felt compelled to write, and so, even if it’s long, I’m going to share some of it here. I know it will help someone.
I’ve been connecting the dots between being a highly sensitive person (HSP) and chronic illness. As HSPs, we learn to suppress our true feelings, our true selves, because our depth is not welcome in this world. And this has consequences; often expressed in our physical body because the stress of the suppression affects our immune system. More on that elsewhere.
In the past several years, I’ve had multiple epiphanies revealing to me I was meant to talked about my experience with chronic illness. I never really followed through. Honestly, it terrified me. A couple weeks ago I finally understood why.
Here is my story and my most recent aha! moment.
My disease, ulcerative colitis, started at 11 years old, at a time when it was unheard of in children. The shame of the symptoms had me keep it a secret for two years. I didn’t tell anyone. At 13, I had a colonoscopy that deeply traumatized me. As crazy as it sounds today, I actually drove myself to the clinic. I felt too much SHAME to let anyone be there with me. I was left alone with a doctor — a man named Loutfi, with dark skin, thinning slicked-back hair and big glasses. Once in his office, he dismissed the nurse and asked me to get undressed. What happened next… wasn’t right.
Very few people know about this because I still feel SHAME. I’ve never shared this publicly.
A few days later, our family doctor called to talk to my mother. I picked up another receiver in the basement and spied on the conversation. He told her I had ulcerative colitis, that it was incurable and that I’d to learn to live with it for the rest of my life.
I remember the rage rising inside me. Rage like I had never felt before. One, how dare he talk to my mother and not to me! Two, how dare he presume to know what the rest of my life would be like. Then I walked upstairs and pretended I hadn’t heard what I had heard.
Suppressing my truth and my feelings was already who I was.
For the next few years, I was put on various medications. They didn’t really work, and they had side effects. Once I had my driver’s license at 16, I started taking myself to various naturopaths and holistic therapists. At some point I was taking 80 supplement capsules a day, trying various diets, including only eating boiled lettuce and goat cheese.
I still felt a lot of SHAME. Like I was a burden, complicated, less than a “normal” person. I was often met with, “Bon! Annie’s sick again.” And asking my father to pay for my treatments wasn’t easy either.
After I left home, I kept the extent of my disease and the intensity of my pain behind closed doors. Many times, I drove myself to the ER and was met with disbelief that I had even managed to get there. Once I showed up with a swollen tongue from dehydration and malnourishment.
Still, to people around me, at school, I looked just fine. I got very good at wearing a mask.
At 28, facing the certainty of death after a month-long hospital stay, I accepted a surgery I had refused many times before. Doctors removed my colon and reconstructed my digestive system. In a weird déjà vu, I took a taxi to the hospital for this life-threatening surgery — no one was available to take me. It was a horrible experience.
The decades that followed were not easy. I still live with several physical challenges and limitations. The last time I almost died from complications was in 2009 (or 2010). I’m a vibrant 60-year-old woman, filled with love, joy, and wonder (except when I’m not). I still believe my best years are ahead of me.
…
IT'S A PRETTY POWERFUL STORY OF SURVIVAL, RIGHT? So why has sharing it been so TERRIFYING? What I recently understood was that it was SHAME that stopped me from seeing myself as a SURVIVOR.
Not the shame of the child, but the SHAME OF THE ADULT who, on some deep level, wondered what kind of fucked-up person lets herself suffer like that, for so long, without asking for help? You’d have to be pretty messed up to behave that way. And REAL SURVIVORS are honourable in their conduct. In my mind, I definitely didn’t qualify.
But a few weeks ago, I understood that I DIDN'T CHOOSE to handle it that way. My behaviors were not conscious choices at all; my ISOLATION, SILENCE, SELF-DOUBT and SELF-DENIGRATION — my INABILITY to see myself as a survivor rather than a screw-up; they were the deepest, most insidious layers of LEARNED SUPPRESSION.
That’s when I knew I had to start PROUDLY sharing that part of my story.
Because those “non-choices” are not unique to me. Learned suppression is the experience of the highly sensitive, and of those of us who have lived with the shame of chronic illness.
And it all has to stop. For our sakes, and for the sake of the world.
Because the world needs our brilliant blend of depth, courage, strength, resilience, intuition, compassion, and wisdom we developed BECAUSE of our journey with chronic illness.
As much as we have suffered, we were never broken; we were being forged.
Life has been hard for us. That’s a fact.
But what if that pain had a purpose?
What if instead of making us feel like victims, it was our portal for transformation?
What if our suffering wasn’t a curse but the path on our Hero’s Journey?
What if the places we’ve assigned shame are the very places where our power lives?
It's time for us to flip the script.
THIS IS THE ALCHEMY WE ARE CALLED TO PERFORM.
We take shame — and turn it into survivor.
We take pain — and turn it into power.
We turn feeling like a victim — into becoming the heroes the world needs today.
Not because we asked for any of it.
But because it is our destiny.
xox
Annie
Survivor
Wow, Annie. What a powerful and harrowing story. Thank you for going so deep with us here and for sharing this. I too believe that our pain has a purpose and it's so much of what we are doing here in this corner of Substack. Honoring it all and digging out the truth behind each moment. Not so we can claim our victimization but so that we can finally set that free. I appreciate you and your journey and I'm so glad you're here in our community. Big hug 💕
It's been quite a ride, that's for sure. Yes, set our radiant self free! Thank you for creating this space. Your voice is beautiful and important. 💟
Hi Nitika. I’m Rachel. You write with such clarity. Thank you for your vulnerability and courage to share this. It is very hard to have illnesses and to need help throughout the flares & episodes. I have also felt shame and felt I was a burden. I accepted this over and over, that I wasn’t a burden and that my family wanted to be with me. And let it (the shame) move on through me. Thank you for your post.
This is so beautiful Rachel, thank you for sharing a bit of your story with me. I am so honored that this post resonated and that you're a part of this community. Big hug 💕
Thank you Natika. A big hug back!
My absolute favorite book about shame is Healing the Shame That Binds You by John Bradshaw. It is one of the older ones my clients have never heard of, and they wondered why no other therapist suggested it. Explains shame so well. Get your highlighters ready, and maybe some tissues and get ready to celebrate you. Shelley xo
This is such a great resource, thanks Shelley! I appreciate you sharing the book with us and I will absolutely check it out.
The event link wasn't working at first but I updated it now! Can't wait to see you all there. https://www.eventbrite.com/e/reclaiming-your-power-beyond-the-wellness-industry-tickets-1233032426179?aff=oddtdtcreator