Mandy’s story 2/2
Mandy had her first migraine at the age of 14 (you can read her full story here), now that she is understands the real cause and triggers of her pain, she shares with us what she has worked for her.
Things I have learned on my TMS journey:
- Emotion often distorts truth– even if there is truth to what I am feeling (ex. I made a mistake and need to fix it) the emotion behind it distorts it (ex. I need to fix this mistake right now or I will ruin everything and it will be all my fault). In 24 hours most things are fixed or blow over and it is not worth the intense stress to take the emotional response as fact.
- Negative thought patterns can be unlearned– Unnecessary anxiety (social, future, etc.), being overly self-critical, reoccurring guilt and shame, constantly forcing myself to do more or be more efficient- are all just behaviors that can be mitigated. They are not permanent. These behaviors can be reduced by journaling, researching psychological concepts, discussing with a therapist, soothing, and making decisions in the moment.
- Positivity and effort won’t fix every situation– sometimes things are bad and there is nothing you can do about it other than feel the emotions and make the best of it. That is the human experience.
- Everything is a gray area– You are not good or bad. Stages of life have good parts and bad parts. Bad situations are caused by a variety of factors, some you might have been able to control, others you could not. There is not always right or wrong. Trying to categorize complex experiences as one thing or another is untrue and will only cause stress.
- I choose to show up for life rather than hiding away from making mistakes or doing things incorrectly.
- How I feel right now matters– I deserve choosing peace in the moment above concern for anyone else. I need and deserve to maintain a level of calm and unconditional self-acceptance.
- I am not broken- physically or mentally. I do not need to keep improving myself or finding the one thing about my life I haven’t fixed yet. I don’t need to focus on my health 100% of the time to be well.
- I now have the tools to handle difficult experiences– I do not need to fear going back to the emotional place that began these headaches.
- Joy can be cultivated– it is there even when it doesn’t feel like it
📚 If like Mandy you have TMS / stress-induced condition this leaflet created by SIRPA provides great information to better understand pain.
Mandy’s story 1/2
Mandy shares with us the story of her migraines: how they started at a young age, the failure of traditional medicine, and how she found pain relief using the mind-body connection . Her testimonial gives us an insight on what it’s like to be a teenager with TMS / stress induced symptoms.
I got my first migraine when I was 14. I remember it was after track practice and I was waiting for a friend to drive me home. I had never felt a migraine before, I felt so bad I had to lay down on the floor of the hallway. I had actually been sick a few weeks before with an odd illness that was never diagnosed. I had had a rash and a fever and stayed home from school for five days. So when I came home feeling terrible, my parents thought it could be the sickness coming back and possibly mono. This was also during the beginning of high school, what I remember as the worst time in my life. Before then, I was an extremely happy person. I had a wonderful childhood and felt like a loved member of my community. I was confident, felt I excelled at everything I did, and was sure of most of my decisions. But high school changed all of that.
I went to an extremely competitive, high pressure high school whereas many of my middle school friends were districted to a different one. I had more trouble with my classes than I had before and lost the passion I had for school. I got bullied by other girls and felt like there was something wrong with me. I was going through changes in my religion, interests, and identity and it felt like everything I had depended on was taken away.
Looking back this is a normal adolescent experience, but at the time it truly felt traumatic. It also fits directly with TMS* that my chronic pain would begin during such a difficult time. At first, the headaches came every few weeks and they would go away if I went to sleep early. Then, they became more frequent, but I could use over the counter Excederin to get rid of them. I became more concerned about how they would affect my ability to homework, and we went to my pediatrician. She diagnosed them as migraines and gave me Imitrex to abort them. She said some people just get migraines and she didn’t see anything else wrong. But the headaches kept getting more frequent and my parents and I weren’t happy with just trying to manage them. We tried the initial treatments you find on the internet: drinking more water, eliminating nitrates and MSG, eliminating caffeine, eating more frequently, checking my eyes. I eventually went to a physical therapist who determined they were from my bones getting out of alignment. This made sense because I was tall and thin and did have poor posture. What did not make sense was that I ended up going to physical therapy for 6 years without any improvement on my headaches.
I continued through high school and onto college and my headaches settled into a weekly pattern. The Imitrex still worked fairly well so I could still live a normal life. My social setting and confidence continued to improve as I got older, yet my headaches remained. Through college I continued to try different treatments. It almost felt like my “mission” to fix this one part of my life that was clearly so wrong. I went to a neurologist and tried preventative migraine medicines. I went to a chiropractor and different physical therapists. I tried massages, acupuncture, and meditation. I saw multiple cognitive therapists and tried anti-depressant medications that gave me terrible side effects. I saw a nutritionist who diagnosed that it was a hormone imbalance and gave me hormone supplements that then caused estrogen imbalance and nausea and vomiting for a year afterwards. I was so young I trusted everything a doctor told me and didn’t think twice about the risk of putting different substances in my body.
I continued these attempts after I graduated college and moved away for work. As I navigated starting a career and being far from home, the headaches got worse until I was getting three each week and taking six Imitrex pills. I tried Botox injections and nerve blocks. I had a neurologist diagnose that I had sleep apnea that was causing my neck to twist at night, so I used a CPAP for an entire year, even on my wedding night. The most extreme treatment I tried was prolotherapy, where three different times I got 800 injections of dextrose in my back. I was covered in massive purple bruises for weeks afterwards. There was no change with my headaches.
Throughout all this my dad continued to think it was stress and he actually gave me one of Dr. Sarno’s books. He had health issues in college that were fixed by reading Dr. Sarno’s book. But when I read it and didn’t immediately feel better, I thought it didn’t work.
I agreed the headaches could be from stress but since I got them every week of my life it didn’t seem related to anything in particular. Now when I see people posting about how to help their teenagers with TMS I tell them that all they can do is provide the information. TMS is something you have to find and believe on your own, especially during an age where you don’t really want to listen to parents anyway.
After 11 years of headaches, I ended up in the emergency room because I ran out of Imitrex. I started finally looking for support groups on the internet. I have since read about the emotional impact of chronic pain and it can be detrimental. With other illnesses or injuries, a person can go through a challenging time but look forward to a future when they will be almost completely better. With chronic pain there is so much confusion, lack of hope, unsureness about what to do next, and isolation. It feels like it might be your fault, like you just haven’t been doing the right thing, and time and money costs are endless. After some google searching, I found Curable. I listened to their initial explanations and heard Susan’s interview about her migraines. As I listened to her story, I just kept thinking this is me. Her personality: high achieving, caring about what others think, always wanting to do the right thing, and her varied, futile attempts to keep her migraines from affecting her career were so similar to my experience.
I knew I was in the right place and jumped into Curable work. I listened to speakers like Nicole Sachs and Dan Buglio. I diligently did their work for a year and started to see changes with my emotional state, ability to process emotions, and general confidence. Simply not having to question what was wrong or spend all my time at doctor’s offices was a huge increase in quality of life. I worked with Edith and got even further with her support.
Since I have had my headaches for over half my life, it has been a challenging pattern to break. I now go weeks at a time without a headache, which was unheard of when I was getting three per week. I believe I have learned everything I need to know about TMS, done the emotional discovery, and redefined the meaning I give to the pain. I am in the final stage where I am learning to simply not care about whether I get the headaches or not and this lack of attention will cause them to go away. I am continuing to feel and release emotions throughout the day, and not focus on not getting so shaken by daily life challenges.
This work is truly a powerful, life-changing process. It makes me feel like I can handle anything and that I have the tools to live the life I want to live. When I hear about other young people having chronic pain, I feel heartbroken for their loss of careless youth, with how quickly they must become experts in filling out medical forms and navigating different doctors. But I also know that it is an amazing gift to go through this journey at such a young age. I understand myself and have the rest of my life to live authentically and courageously. I know how to handle emotions so that they don’t poison me or those around me.
This is not only the work to get rid of chronic pain, but a practice that cultivates inner peace and makes the world a better, more loving place.
👩🏫 What is TMS? It’s physical pain, usually chronic that is not caused by a physical issue, but by psychological stress. https://www.tmswiki.org/ppd/An_Introduction_to_Tension_Myositis_Syndrome_(TMS)
📺 Resources to better understand pain
Tara shares with us her brave journey of recovery, the impact of shame as a trigger for her pain, and how her uncompromising passion for horse riding fuelled and sustained her healing process.
“A ten year old child, watching basketball games in the gym of her junior high school. Knocked back with the first intense shooting stabbing pain that ripped through my shoulder, followed by numbness. That pain would come and go for the next 30 years. Along with added neck and back issues, fibromyalgia pains, pelvic issues, warts on the feet, and OCD/Anxiety on a low enough level I didn’t notice it much. I would pop a handful of Ibuprofen in my teen years, before a bike ride to try and ease the back pain that would come up during and afterwards. I kept riding horses. No pain would keep me away from my dream.
Fast forward to 2018, 39 years old, been on pain medication for 5 years (5 different medications), moved (regret), changed jobs (regret), lived to see my Dr. every three months, did my best to care for my family but found myself at rock bottom. Had my first panic attack in the barn, alone. That led me to find The Cure for Chronic Pain with Nicole Sachs. Journaling, learning about pain science, and applying what I learned to my life, walked me step by step out of chronic pain. I can now ride horses without pain. I can get back to doing what I loved to do, and I know now that no fall from the horse as a child caused my pain….
I recalled watching a friend on the [basketball] court who had been with me when I fell off the horse [a couple of days prior]. I know without a doubt that the shooting pain came on as I was reliving that fall and wondering…. Who did she tell? What does she think of me?
I was fearing the embarrassment in that moment and my brain tricked me with the shoulder pain! Nice try you tricky brain…. Fooled me for 30 years…. Now I’m back in control.
I still have occasional stiffness or a sore neck, but once I am able to use the Journal Speak practice [method of journaling created by Nicole Sachs], meditate, and get back to being patient and kind with myself…. I’m pain free.
The illustration features the horse that bucked me off in July and I broke my tailbone. I used all I’ve learned about TMS and was riding again in 6 weeks! During my years of chronic pain, I was restricting myself to short rides, not able to lift heavy saddles, and the low energy caused by pain only allowed for a short ride across the street. Today, this would be an hour long ride and many more photos could be shared. Pain kept me from ME. I’m back!
What I’ve learned from my pain:
My pain has taught me patience. Something my 6th grade teacher said that made me crazy mad. “Tara, ….. patience…. is a ….. virtue” I still get chills imagining her long drawn out words .
I resisted living in the moment, always trying to stay one step ahead of everyone!
My pain taught me that inside of me are all the younger versions of me, dying to help me feel all the feelings now.”
Tara’s favourite pain education and personal development resources are:
🎧The Cure For Chronic Pain Podcast with Nicole Sachs, LCSW
📺The Cure For Chronic Pain with Nicole Sachs YouTube channel
🎧The Mind and Fitness Podcast with Eddy Lindenstein
🎧Mindbody Mastery Podcast with Katelyn Michals, L. Ac
🎧More Than Mindset Podcast with Kim Guillory
📖A New Earth: Awakening to Your Life’s Purpose by Eckhart Tolle
The story you’re about to read is a story of survival, a story of truth. I thank our contributor for sharing it with us.
“In May of 2013, I started experiencing extreme soreness in/on my hips. At this point in my life I was happily married, the mother of a wonderful 8 year old girl, I had my own business in organic skincare and was a daily practice yogi of about 8 years. I also had a history of anxiety and depression, a traumatic childhood, I was a perfectionist, a people pleaser, a worrier, a self loather and I was in the midst of my third estrangement from my narcissistic mother.
I remember having my first panic attack at 12, on the heels of my parents divorce. As a child I was responsible for my younger brother most days and on this day I was staying home from school with him while he was sick. During my panic attack that day, I lost all vision and was taken to the Dr. while I screamed and cried in terror. I was given a sedative and when I woke I had a headache and since then I have learned it was called “hysterical blindness*” I continued to struggle with panic and vision disturbance for the next 30 years. As a child, teen and adult I also had depression, numbness, stomach upset, back pain, knee pain, wrist pain, insomnia, ringing ears…all TMS**. I treated these symptoms physically, always. Doctors, medications, rest, physical therapy, chiropractors, massage, braces etc.
In 2013 I was at the height of both personal pressure (motherhood, small business, marriage, family problems) and I was at the top of my game physically due to my very intense daily yoga practice. As my pain increased, I became more and more terrified of losing my practice as this had become my most effective method of controlling my emotional and physical symptoms. At the peak of the estrangement with my mother we had a screaming phone call and I woke up the next morning with my back “out.” I had what I called “my knife,” a stabbing pain mostly in my left SI joint. I never correlated it to our relationship or our fight. For the next two years I was in agony. I became so debilitated I lost almost everything I found important to me. I could not sit, drive, bike, exercise, cook, clean, work, dance or hardly move. I wore braces, took pills, my business closed briefly, I had insomnia, my hair fell out, I lost 25 pounds, lost friends, and I was bedridden in between Doctors’ appointments. We spent about $25K trying to “fix” me. I had a million diagnoses, nothing worked. I couldn’t hold my daughter, I couldn’t play with her, I was dependent on everyone, I was shattered. My world was a very small circle of those who stayed and cared for me and my family. Everyone else left. I was suicidal and I would beg my husband to take our child and leave. During that time my mother and I reconciled and she relished taking care of (and taking over) my life. I was too sick to do anything. I wasn’t living, I was existing.
In 2015 an friend gave me “Healing Back Pain” by Dr. Sarno. How dare she! How in the world would a book cure my back pain? I read a few pages and threw it across the room in disgust. During this time I had started listening to a lot of meditations for pain relief and attending workshops and meeting with a group about raising consciousness and healing your childhood.
It was during one workshop that I had physically thrashed and tantrumed with no pain during and after that I started to notice patterns. Certain people, places, experiences had an effect on my pain.
I decided to read the book from a different perspective. I had nothing else to lose or try anyway. I read the book in about 10 hours and hysterically cried, cheered, underlined, read aloud to my husband and generally freaked out. It all made sense. This was it. This was my diagnosis. This what what I had! After reading the book I had about a 50% decrease in my pain. If it didn’t happen to me, I wouldn’t believe it. But it did. I now know I had a “book cure”.
So now I was on cloud 9 and OBSESSED with all things TMS because I want this gone and NOW. Well that’s not the way it works and I really had a whole lot ahead of me. I got hooked up with The Pain Psychology Center of Los Angeles and began sessions with my fantastic therapist, Christie. For the next two years I fired all my doctors who didn’t believe my diagnosis, threw out my braces, got off my medications, started moving again. If I thought my two years of pain were hard, I would have to say the first two of my recovery were harder. But they were so much better because I learned so much and I had so many wins.
I began speaking my truth, setting limits, actually healing my traumas emotionally rather than physically. I was like a child learning how to do everything again but with gentleness, slowness and kindness. I re-parented myself.
I can finally say at the age of 40 I learned how to love myself for the first time in my life. Little by little, my pain decreased. And it was slow. And I had flares. I still do. Of course there is one person who was not supportive of my process. I had to say goodbye to her 2 years ago to save myself. It is more painful emotionally than any physical pain I endured, but it is my truth.
It’s been about 4 years in my recovery. The last year or so, I have either 10% of pain or no pain depending on my life circumstances. No life is pain free, but I am CHRONIC pain free. I live again! I dance, travel, drive, eat, bike, work, cook, clean, exercise, and I have the best friends and family in the world. I run around with my now teenage daughter who knows all about TMS. My husband never left.
The next part of my recovery story is helping others and spreading the message. I talk very openly about my story with my community and now I’m starting to share it more globally. Expression vs. suppression. Love vs. fear.
My pain has taught me so much. It is my alarm signal. It is trying to keep me safe. It did keep me safe as a child, and now as an adult, I can keep myself safe. Thank you, pain. “
👩🏫 *Hysterical Blindness is now referred to as Conversion disorder or functional neurologic symptom disorder. According to Wikipedia “The term “conversion” has its origins in Freud’s doctrine that anxiety is “converted” into physical symptoms.”
📖 **The term TMS (or Mindbody Syndrome) has been coined by Dr John E. Sarno in his books Healing Back Pain and The Mindbody Prescription. The core concept of TMS is that repressed emotions (more specifically rage because it’s not acceptable in society to express it) is the underlying cause of most chronic illnesses. Reading her story and all the trauma that our contributor went through, we can understand why she would carry a tremendous amount of anger.
👨🏻⚕️👩🏿⚕️There is strong scientific evidence that supports the Mindbody connection and a growing number of health practitioners in the field. If you’re looking for a health professional who understands the influence of psychological factors on physical health, the following organisations may be of interest: Pain Psychology Center, SIRPA, PPDA, TMS wiki
My Origin Story by Ann
Have you ever wanted to walk out the door, get in your car, drive somewhere far away, never to return? I can’t count the number of times that thought has bullied its way to the forefront of my mind.
I have been allowing my experiences to lead me to believe that I’m not good enough since childhood. I non-gracefully stumble through years of awkward attempts at “being better”, at least, hopefully in the eyes of my family and friends. I swing back and forth from being loud and aggressive to passive and invisible. These life experiences lead me to believe that the best way to survive is to bury my hopes and desires, to ignore the whispers that come to me at the most inopportune times, whispers that are my true self reminding me who I am and what I want. It’s why I realize when I’m in my early 30’s that I’ve never had a genuine desire to be a wife and mom. I’ve always based my decisions on what I think I’m supposed to do in life. My response is to ignore my gut-wrenching feelings of guilt by working to be “better”.
What I don’t know is that the choices I’ve made all these years to live unauthentically is why physical illness begins consuming every aspect of my life.
Headaches begin at the age of 16 after recovering from the worst flu of my life. Headaches are just the beginning of what’s to come. Next come years of Chronic Fatigue Syndrome, throughout my 20’s, 30’s, 40’s and beyond. Perimenopause brings with it vertigo and Histamine Intolerance, which leads me to alter my diet drastically. Ultimately, the more I limit my diet, the worse everything gets. The worse everything gets, the more I do not want to be here anymore. “Could you BE anymore selfish, Ann! Do what you have to do!” My brain always manages to jilt me back toward “reality”.
As I sit in the emergency room for the third time in two days, exhausted, dizzy, and nauseated, I wish I could be anywhere else but here. I think about what it would be like to leave behind everything and everyone I know. It doesn’t take long, though, for my “Inner Critic” to start in. “Get over yourself, Ann! Suck it up! How can you think of doing such a selfish, irresponsible thing, especially at a time like this?” I don’t know what feels worse, the fact that I consider such an idea or that I’m too weak, sickly, and scared to do it.
I envision my trusty friend the hamster (AKA Me) on her wheel with her punching gloves, frantically fighting and using every ounce of energy she has to get away from her life. What I notice through the block of ice surrounding her is that she is moving very slowly, shoulders hunched over, and punching gloves hanging down at her sides. She’s looking over at me with the most lost, defeated expression. But there’s also a glimpse on her pathetic little face of, “What do we do next?”
I’d like to say that this is the moment when I say, “Enough is enough”, but I’m just not ready. Instead, I shove my emotions down, down, down, wondering if there is any more room in there for more dark, ugly shadows. I feel my heart closing tighter than ever before, and as it does, another layer of ice forms around my broken little hamster within. As fractured as she is, she has convinced herself that she is safe inside this block of ice. It’s time, though, to step back into this hospital environment, into the reality of my husband’s current health crisis and to acting like a “good wife”. After our marathon of hospital ER visits, I return to distracting myself with work, caring for my husband, and telling myself that life is meant to be a struggle and it’s my job to endure it.
Ultimately, though, the Universe has a different plan. Who would ever believe that a kidney stone would be a person’s saving grace? Along with excruciating pain and nausea, it brings about more panic than I’ve ever experienced in my life. Letting down the teachers and students that I work with has me gripped in anxiety and fear. I’m convinced that I have a Urinary Tract Infection as a result of the kidney stone, so I schedule an appointment with my Primary Care Physician. I have a meltdown in his office, and he proceeds to put me in my place.
He says that I do not have a UTI and that my nausea and other symptoms are no longer related to my kidney stone. They are due to stress, and I need to recognize that fact and begin caring for my physical and emotional well-being.
I take a leave of absence from my job and begin caring for ME. I begin walking, meditating, and researching new ways to address my health problems. I also begin my spiritual journey. At the foundation of it all is my desperate need to find the solution to my health problems. The physical suffering has me on a roller coaster of emotions. The good news is that I’ve begun to acknowledge my emotions, but I am gripped with the fear of my symptoms and believing that this is what I am going to have to deal with for the rest of my life. I am aware of my emotions from within, but I continue seeking answers outside of myself. I have become so frozen in fear that I become somewhat of a recluse. It is less stressful to be by myself in my own little cove. Traveling and being around others where I’m not able to control the food, temperature, sound volume, etc. just becomes too much. I sometimes force myself into those situations out of that pull to do the right thing and not be selfish, but with it comes a great deal of physical suffering.
As part of my spiritual path, I have worked to forgive others and to maintain a state of feeling peaceful and happy as much as I possibly can. When I’m not peaceful and happy, I resist what I’m feeling and continue seeking answers through diet, exercise, vitamins, herbs, and various other alternative healing methods. I’m truly grateful that I continue finding the strength and courage within to persevere. My unwillingness to give up is what finally leads me to information that suggests that my symptoms could be 100% due to my emotions. My brain is simply protecting me from the consequences of my feelings by distracting me with physical symptoms.
I’ve understood for years that my illness is due in large part to stress and not being true to myself, but now I begin to dig down much deeper than ever before into ALL my emotions. I acknowledge and accept all the feelings that I have buried over the years, even those that I didn’t know were there. I can honestly say today that I’m truly grateful for every life experience. I’ve had so many opportunities to listen to my inner voice over the years, but every time I veer off the path, another experience always guides me back to the main road. I now know what my inner and outer purposes are. I now know, first and foremost, that I will live authentically. I will continue to step outside my comfort zone and say “YES” to the Universe. I now know that courageousness flows from vulnerability. I now know that my vision is to assist other women to rediscover their true natures and to transform their lives.
🎧 Ann’s recovery story also features on Katelyn Michal’s fabulous Mindbody Mastery Podcast, episode 62
🎧 The Cure For Chronic Pain with Nicole Sachs, LCSW is also an indispensable resource.
📖 The 4Fs: A Trauma Typology in Complex PTSD by Pete Walker is an excellent article about fight, flight, freeze and fawn responses.
In one episode of Sex and The City, vulvodynia is presented as the symptoms of a “depressed vagina”. Could there be truth in this statement?
I was personally diagnosed with vulvodynia, and it happened just like in the episode. The gynaecologist at the time prescribed me some anti-depressant for a pain that I felt physically when (just like Charlotte) I did not feel depressed at all in my head! The Shadow Side of Pain is a project that explores physical pain from a psychological point of view to better understand how our mind, our body and our repressed emotions are connected. My experience with vulvodynia is a perfect exemple that mind-body connection exists.
I’m going to talk about my symptoms, sorry it’s not going to be super glam’ 😬. A few years ago, I had pain at the entrance of my vagina, a bit like a permanent tension with fluctuating intensity. I also had other charming symptoms that sometimes felt like a UTI, sometimes felt like a BV (bacterial vaginosis) or a yeast infection. It kept on changing. I did lots of tests, and never was I diagnosed with anything: no infection, no STD, nothing. I was basically in pain, for nothing!
After many appointments with different doctors, I ended up seeing a super helpful gynaecologist and she told me that when she was touching the same spot in my body, sometimes I would scream, and sometimes I would not feel anything. With seconds of interval, the exact same spot would change from painful to pain-free. She then said : “I know that your pain is real, however from a structural point of view, as a doctor I see nothing! You have what is called Vulvodynia”. At first, I resented that diagnosis and I resisted it thinking ” Whaaaat? Is she telling me it’s psychosomatic? No waaaaay! I can’t have that, not me!” 😤
She gave me a fact sheet about vulvodynia and I went home. As I read the document I recognised the symptoms and their shifting nature, it helped me accept the diagnosis even though I was not amazingly pleased to go back home with anti-depressants. I spoke about it to a friend of mine on the phone (David, if you’re reading this ! 😙) and he asked me ” Are you sure it’s not related to your ex?” …😳… Tears welled up in my eyes. He was spot on. I hung up.
At home, I went into introspection mode and engaged in an inner dialogue alone on my couch. First, I asked my self “What has changed in my life since my break up?” . 3 things:
- I had been experiencing night terrors. Several times a week, I would suddenly wake up at night, screaming. I had nightmares about thieves breaking into my house. In French the expression “penetrating my house” came to mind. After sharing my life with someone for years, going back to living alone was subconsciously a source of anxiety even though (on the surface) I’m SUPER independent, I’ve always LOVED living alone, I don’t need anyone…etc…however deep down, I was scared.
- I had developed a very weird phobia. (Please don’t judge me! 😬) I was scared (very scared) to put on my boots because, my brain was telling me there could be a spider inside my boots!
- My pelvic pain was located at the entrance of my vagina
I wondered what the connection was between those 3 things and then it hit me! I understood that the common denominators were intimacy , vulnerability and fear. The truth is I was scared that a thief/a spider/ a guy or something would hurt me inside my personal space. Crazy isn’t it?
Once I grasped what my body was telling me, I cried and cried, I accepted my fear, how fragile I felt. My vulvodynia disappeared ON THE SPOT. Poof! Gone! Just like that! It came back a few years later, when I let someone in (a new boyfriend). It was hard for me to trust, however thanks to my understanding of the symptoms, I knew how to heal myself by acknowledging and expressing my fear. Today, I no longer have pain or symptoms down there; my vagina is no longer depressed! 🌈☀️
As you can see, it’s really worth having an honest discussion with one self when we have symptoms that doctors can’t really explain.
❤️Thanks to my vulvodynia I have learnt to fully accept myself when I waver, when I’m scared, when life is hard. It was important for me to give myself permission to be less strong than I wanted to be. When we stop living the way we want to be perceived by others, we feel genuine relief because we then stop fighting against ourselves, and it’s through acceptance that resilience is born 🦋
☝️In my experience, vulvodynia was clearly caused by repressed emotions and possibly by a past trauma. If this speaks to you, please always visit your doctor first to rule out anything serious. As you do that it also doesn’t hurt to truly connect with yourself without judgement and ask “How do I really feel in my life at the moment?”
Kate kindly shares with us her story of chronic neck pain/neuropathic pain.
“This costume expresses the invisible pain I used to feel 24/7. I trained and worked as a set and costume designer for theatre in the UK and would create similar drawings and costumes like this one on a regular basis. It felt natural for me to represent my pain this way. It was very important for me to do so as I had lost this aspect of my life due to pain. I had to give up my job as well as the pleasure of drawing, sewing and most creative activities. The pain meant I could not use my arms at all even viewing theatre was out. I couldn’t sit for long in the cramped theatre seats.
It took me a long time to design the costume but I felt it was worth the pain nonetheless. I wanted to show the livid nature of the pain I was living with because it was invisible, I looked fine on the surface and it was a struggle to get doctors to believe anything I said.
This struggle continued in the medical community and socially as most people struggled to understand a young seemingly healthy woman complaining of high level of pain not working due to it. In designing this costume I felt i was combating a lot of the times I had had to explain myself. It was very empowering.
When the finished costume was gifted by a colleague of mine to the Charity (Editor’s note: Kate is talking about the charity Something Chronic that she co-founded) as a surprise, it had a huge affect on anyone who saw it. The very human nature of a wearable piece of visible pain even when displayed on an inanimate dummy was powerful and has since been our most effective tool to raise awareness of this thing otherwise known as chronic pain.”
📌THE MINDBODY CONNECTION
“By the time I had found John Sarno and the Mindbody connection I had been in pain for seven years (….enough to declare someone dead right?). I had undergone every medical procedure under the sun and taken every horrible pill you could think of. I was desperate. My last ditch attempt was having facet joint injections and a multiple botox injections in trigger points. I was marked up for this and my back looked like a join the dots puzzle! And not a good one. This was a few weeks before Christmas. The anaesthetic probably gave me a few days grace then the pain came back with a vengeance! Not helped by Christmas shopping!
This was crunch point. I had been very low and suffered from depression throughout my journey with pain but I hit a new low after this operation when the pain came back. I remember trying to take my dog for a quick walk and just stood sobbing in the field. I then met with another dog walker, a friend of mine whose Mother had passed a week before. Jackie was a big part of my life and an even bigger part of our village life, but because of my pain and desperation I was in a worse state than her daughter.”
“Something had to change.
I knew about Nicole Sachs and her work with John Sarno but it hadn’t clicked. I went home immediately and watched one of her YouTube
videos. I felt instantly better emotionally but the pain was the same. I then realised I had to give this a real shot.
I had John Sarno’s Healing Back Pain on audiobook but I had been afraid to read it. I think I was afraid that another method wouldn’t work, I was really at the end of my tether. However, after the emotional lift of simply watching Nicole’s video, I screwed up my courage, got my dog and headed out for the woods ready to listen to Healing Back Pain. With Benji, the spaniel by my side, I felt strong enough to take the message in, and I was shocked at how I understood and empathised with everything in the book.
The next morning I had a physical memory of what it could be like without pain in my neck. This was something I have never been able to imagine before! It had been beating at me for so long. I felt lighter.
The next night I woke in pain but astonishingly I was able to talk to my brain and tell the site “trigger point” in my shoulder to stop. It squeezed out of my shoulder / back like toothpaste out of a tube leaving me shocked!
Every day since then I have felt a little lighter. Not every day is better pain wise but I know I’m on the way to pain free!”
“I already knew that my experiences of repetitive bullying and exclusion at both school and ballet school was a great source of stress for me, but I didn’t accept that it could be taking a toll on my body in terms of repressed stress and anger. Being freelance in theatre whilst my contemporaries were climbing up the ladder in their more “normal” admin jobs within the business, allowing them to relocate within the same postcode was a key factor. This was amplified when they cruelly decided to ditch me because of it. It is hard not to internalise and self criticise under such stressful circumstances. I was in a rage because despite huge amounts of work and sacrifice, my life was not where I wanted it to be. I was forced into comparing myself with let’s face it, horrible people!
I am the typical high achieving perfectionist. I had been good at everything and excelled at school and university with lots of extra curricular commitments. My anger at getting chronic pain that I couldn’t control or work my way out of just made the problem worse.
[What I’ve learned from pain is that ] No-one hurts me anymore! I have learned too much and my own body has hurt me too much that anything and anyone else is small fry!”
👩❤️👩 Kate founded Something Chronic, REimagining Chronic Pain Through The Arts with her life long friend Alice. Something Chronic is an arts-based organisation created to broaden society’s understanding of long-term pain, and to provide an inclusive platform for sufferers to find shared experiences and empathy, through original and thought-provoking works by contemporary artists.
I’ve had eczema since I was a little girl. It’s the cross I bear. I’ll always have it and that’s the way it is. One day, a doctor told me that there was nothing to understand about it, it was atopic, it was in my genes. I said okay.
Even without actively trying to understand why I have eczema, I realised soon enough that big flare ups would occur when I was stressed, when I was not happy “in my own skin”.
A few months ago I had a lot of eczema on my hands, as in the illustration above. I thought it was strange because I was not stressed at work, and on the contrary, quite happy in my life. Despite the doctor’s comment, I could not help it then, I wanted to understand…
I sat down and looked at my hands. I often get eczema in different places whenever I get a rash, however, I had never had eczema between my fingers like this, all along them on the side, and on the upper side of my palm. I had also a little bit of redness on my knuckles. The moment I thought about the word “knuckles”, my intuition told me I was on the right track…
I clenched my fist and told myself “Oh! It’s funny, I can’t see my eczema anymore when I clench my fist! All my eczema is contained in my fist!” That’s when I had a aha moment! 💡It made so much sense! I looked up and realised ” It is my anger! The eczema, the fist I raise, the fist that fights, it’s my anger!”✊👊
It’s true that at that time, I was reading a lot of feminist books, and some of them open my eyes on a lot of important (and painful) facts about women’s condition, which triggered overwhelming waves of rage inside me. When it happened I did not know what to do with that rage, I did not know how to channel it or who to blame for it so I immediately dismissed it and repressed it.
What I learnt thanks to eczema is that feeling anger is healthy. It means I matter, I have worth, boundaries, that I am taking space.
Once I realised that my flare-up was connected to anger, I freed up the emotion by beating up the (very innocent) cushions of my couch, by screaming insults into the void, by saying it was not fair, by crying. Thankfully I live alone so I can go crazy without worrying or disturbing anyone! Quickly after that I had to rush to work…
Once at work, I looked at my hands and my eczema was cleared! All gone! Just like that! My skin was dry on the affected areas but the rash, the redness, the inflammation were gone. As you can see, sometimes it is worth trying to understand.
📚Feminist publications that opened my eyes on the patriarchal society we live in. I would like to thank the authors for their essential work in educating us.
📌Sorcières : La puissance invaincue des femmes by Mona Chollet, publisher La Découverte. I reeeeeeally hope this indispensable, mind-blowing book will be translated in English very soon.
📌All of Emma‘s work in general. She especially rocked boat (and changed my life) with her theory about the mental load women bear in her comic You should have asked . You’ll find extracts of the book (in English) here.
📌Another comic: Fruit of Knowledge by Liv Strömquist, which I imagine is as radical and hilarious as I’m every woman (the comic I read and loved, which hasn’t been translated into English to my knowledge),
📌 A brilliant podcast in French by the journalist Victoire Tuaillon called Les couilles sur la table (Binge Audio).
This is the story of Neal, in his own words:
“This image depicts my upper back and neck, particularly the right side, as being overcome and consumed by rust, robbing it of natural, easy function and movement. My spine appears as links of chain that will begin to break down and malfunction as it succumbs to the rust, turning me into a figure whose physical capabilities are restricted, like the Tin Man from ‘The Wizard of Oz’, when he is in desperate need of oil just so he can move again.
I lived with acute pain throughout my neck for around 11 years, following a physical assault that I could not have prepared for or defended myself against until it was already happening. As a child I experienced repeated similar attacks from within my family and it is fair to say that a large portion of my formative years were spent in a state of heightened nervousness. Fearing for my safety and well-being became normality, tension within my body and mind were never far from the surface.
I firmly believe that the attack on me (at the age of 34) brought back a wave of tension that had been long forgotten, as though something that laid dormant within my soul had been released and spread through my body, finally settling in to a new home in my neck and back.
After so many years and so many dollars spent seeking and trying a range of treatments to somehow reduce my pain my body responded (finally!) in the manner in which I truly thought it never would. I feel pretty much ‘normal’ these days thanks to physical treatment and my own mindfulness, although there remains, at times, some restriction and varying degrees of muscle tension. The rust returns but can be minimised, even banished, with the right set of tools. My body remains a work in progress to some extent, something that I can happily rely on now.”
📌In his testimony, Neal connects his pain with childhood trauma, and fear. The concept of memory also applies to the body. If our body remembers automatically how to ride a bike, how to ski, how to walk, how to scream, or run when in danger, our body can react with the same defence mechanism (tension/pain/unpleasant sensations) to a trigger that reminds us of a past traumatic (or scary) event. Our body stores information, our body remembers in order to protect us.
🤡 Stupid example, after getting really drunk on Lychee liqueur when I was 18, it took me yeeears to be able to eat the actual fruit without gagging! I even nearly spewed once on Christmas day because there were lychees in my fruit salad. Anyway…!
📚 For more information about the impact of trauma on the brain, the mind and the body, I would recommend this book: The Body Keeps the Score by Dr Bessel van der Kolk.
This is Elvire’s story in her own words.
“During one of the hardest time of my life, I found fresh blood in my stool (yes, talking 💩 on the Shadow Side of Pain!). I had numerous exams, was sent to three different doctors and all confirmed the first diagnosis: it was a bout of Crohn’s disease, without real symptoms nor evolution. A disease I never had before.
ℹ️ Crohn’s disease is a chronic auto-immune disease in which the defence system of the body attacks its own guts. It is an awful disease, full of pain and surgery.
At that time, I had just been through one of the worst self-hate episode of my life. Depression was so high I couldn’t function correctly and the hate was *eating me from inside*. I *hated my guts* every breathing second because I sincerely thought I was a monster that deserved punishment.
I’m pretty sure my body reacted to that and created a false Crohn’s disease.
Disclaimer: of course I’m not saying every Crohn’s disease is due to self-hate. I’m not a doctor! but my so-called Crohn’s was probably a psychosomatic episode. And it never happened again.”
Sending love to all the IBD sufferers.” ❤️
My mother used to experience neck pain and every now and then I do too. One day I woke up and the pain was so sharp that I could not look up. The pain forced my posture to remain in a chronic position of bowing. 🙇♀️
I had just been through a humiliating episode in which I had reluctantly shut up and bent my values for others because I was scared to cause a stir. Pleasing people to avoid conflict seems to work on the spot but it’s a slow death for the soul. We obliterate our sense of self when we sacrifice. Also the conflict doesn’t even go away! It would be too easy! No, the conflict is transferred within because our actions are no longer in line with our values/our boundaries/our needs/our gut instinct… what makes us who we are.
In my neck I was feeling :
😡 Anger! Against myself of course, for betraying my values
😖 Shame! for being weak, for not speaking up … and also….
😨 Fear! Fear for what might happen if I stand up for myself like I know I should ☠️.
What I’ve learnt from neck pain is that I can’t see the sky when I bow.
Fear and pain dissipate if I try, little by little to:
- set a boundary
- say no
- stand up for myself …