Chronic Illness Through My Eyes
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Illnesses usually have a dramatic beginning—a high fever, startling chest pain, or an unexpected seizure. Not mine. I was ill for years before any doctor I saw believed I had a disease-let alone 5.
WHERE IT ALL STARTED
Some may say it started when I was a little girl. Monthly ear infections and strep throat. Nightly knee pains. Unusual rashes, constipation, and mouth ulcers the size of dimes.
Others may say it began in college with frequent illnesses and recurrent black outs. Funny story about my first day of college. I passed out in ceramics and awoke on the floor, surrounded by classmates, with my professor shouting out, “Are you pregnant?”
In my early 20’s, I just felt off. Like I was continuously pushing the pedal but out of gas. You know that feeling where coffee becomes your best friend? I was suffering from a robust list of medical conditions that seemed to be increasing by the year and my friends and family developed the phrase, “It’s just Heather”.
I was 33 and beyond excited to be pregnant! Not so excited about the pain that radiated down my arms or the numbness in my feet. I consulted with a doctor that was suspicious of a disease, “possibly AIDS '', he said. Not something you want to hear as a new mom!
Turns out it was Sjogren's Syndrome which brought me to my first specialist. Within 5 minutes he nonchalantly stated, “ Come back when your symptoms are unmanageable and we’ll put you on immunosuppressants, probably for life. This will be a black mark on your insurance so hold off as long as you can.” Side note-Sjogrens can be fatal and this was his best advice?
My symptoms were annoying but manageable until the birth of my son. Constant flu like symptoms and a level of fatigue that just doesn’t exist in the dictionary. Brain fog that mimicked Alzheimer’s. Symptoms that were invisible to most everyone except me. Over the next few years I saw a handful of specialists. No one knew what to do with me. I remember one doctor who said, “ You are just depressed. You need an antidepressant.” I knew in my heart that wasn’t the issue. Something was seriously wrong. I strapped my 2-year old son in the car, turned up the volume to Kids Bop, and sobbed the entire way home.
This journey turned me upside down and inside out. At one point, I no longer wanted to be a participant in life. When you are sick, the act of living is more ACT than actual living.
Divine intervention came just when I needed it most. I found a doctor who truly listened and held a space for me to share my story, my fears and my grief over the life I felt I had lost. She told me I was beyond exhausted and only a few days away from being hospitalized. She also diagnosed me with Hashimoto’s Thyroiditis and Raynaud’s Disease.
Over the next year,I learned to listen to my body rather than my personal motto of push through and ignore. She proposed dietary and lifestyle changes as well as emotional and mental work. These life choices were counter intuitive to my Type A personality. And although I felt like she was speaking a different language, I was just desperate enough to give it a try.
This is when I went from surviving to thriving.
I gave myself permission to take life one day at a time, avoid unnecessary socializing, focus on healing foods, and not indulge in anything that did not do me good. My life choices created some push back with friends and family, and I frequently felt unsupported, but I knew it was a matter of survival. And miracles of miracles, I began to heal.
I climbed the mountain of three AI diseases, took a beat to bask in my accomplishments and good health, only to realize there was another mountain to climb.
Significant stress, a flare up with Sjogrens and Hashimpoto’s symptoms and a new possible intruder-Rheumatoid Arthritis. I was told I had little choice but to take medication for Sjogrens and that we would monitor my Rheumatoid Arthritis markers and “see what happens''. Because this doctor was considered an expert in his field, I tolerated the frequent 2-3 hour wait to see him, the constant interruptions, and his deference to my husband when it came to my health and the decisions that needed to be made. The result: no improvement and my eyelids were turning a brownish gray.
So I tried another specialist, who unapologetically stated on the third visit, “There is nothing western medicine can do for you.” This is when I realized I was on my own.
I was overwhelmed, scared, and unsure about my future. I was stuck in a constant state of worry. How could so many specialists fail me?
During this time, both of my children were diagnosed with a series of what seemed to be random conditions: mental illness, Rolandic Epilepsy, asthma, ADHD, chronic strep, headaches and debilitating fatigue. I was a mom first and foremost and I was determined to do everything I could to keep my kids from ending up like me. In my mind, this meant focusing on their health and ignoring mine. The result: survival at its most primal level. I was losing the ability to walk or even stand for more than a few minutes.
A year or two later (it's all so blurry) divine intervention struck yet again. A new doctor, a magnifying glass on my family's health , and a frequently overlooked trigger of autoimmune disease-toxins. We were suffering from 13 years of black mold exposure. Over the course of the next year, we purged almost everything we owned, lived in 4 different homes, and began mold illness treatment alongside dietary interventions. To say it was a traumatic experience is an understatement.
To walk away from your entire life and everything you own, is beyond difficult emotionally, physically and financially.
After a few months of construction projects at our new home, to minimize future mold issues, things began to settle down. Everyone’s health improved-except mine. Enduring this incredibly stressful period brought a new silent assault on my mental and physical well being. I developed an acute hypersensitivity to chemicals that left me dizzy, confused, fatigued and achy. I couldn’t enjoy a meal at a restaurant. I had to avoid my children’s friends because of the fragrances. I couldn’t visit people’s homes, go shopping or even walk down the street due to the overwhelming smell of fabric softener lingering in the air.
Finding the mold, remediating the mold, and detoxing from the mold turned out to be more than my body could bear. My brain was stuck in fight or flight and I was diagnosed with PTSD from mold exposure (which apparently is quite common). After a brief mourning period and the understanding that most of my family and friends would think this is just another “Heather thing”, I did what I always do. I set out to find a solution and I did just that!
Over the next 6 months, I dove into a program that taught me how to reprogram my brain and significantly reduce my response to chemicals. I felt healthy and free for the first time in years!
I languished in this state for some time, until a massive emotional stress permeated my entire existence. My husband and I were contemplating divorce. There was so much disappointment, anger, resentment and hurt. I didn’t know how to express my emotions but my body sure did- an angry rash, intolerable itchiness, difficulty with words and sentences, and on some mornings, a struggle to get my hands to my face. I had previously been misdiagnosed with MS, would this be my next mountain to climb?
The good news is that it wasn’t MS. The bad news is that it was something more complex- a controversial disease within the medical community called Chronic Lyme. The more I learned about Lyme the more I understood my crazy and unpredictable journey with health: three autoimmune diseases, mass cell activation, CIRS (mold illness), fibromyalgia, IBS, chronic fatigue, hormone and adrenal dysregulation, food and environmental sensitivities, histamine intolerance, gut issues, nervous system impairment, neuropathy and all the symptoms I had been experiencing off and on for the better part of my life was rooted in Chronic Lyme Disease. It had become the unwanted conductor of my out of tune symphony.
FROM SURVIVING TO THRIVING
Chronic disease, and all that it is associated with, can make a person feel alone, isolated and at times flat out hopeless. It changes and challenges every aspect of a person’s life: relationships, social life, career and finances. It can make one question your values, beliefs and purpose.
I however, now (and it took me a long time to get here), consider myself one of the lucky ones. Through this experience, I have discovered my purpose and that is simply to help others who are struggling with chronic and unresolved symptoms to feel a sense of empowerment and hope. It sounds so cliché, but my struggles with health didn’t happen to me, they flat out happened for me.
As I close this letter, I am recovering from my third bout of COVID. It’s an ongoing journey and I am thankful that my body keeps me on my toes and is my forever compass. I used to be torn between what other people can do and my body’s need for a healthy lifestyle, quality sleep and less stress. I’ve learned to give myself permission to surrender to my body's needs and to get back up and go again. I understand life from a different perspective now, and that perspective has taught me to be a kinder and more empathetic soul to others and more importantly to myself.
I am excited for what lies ahead of me because I know I have the power to change the trajectory of my health. Through the years, I have come to understand and appreciate my personal triggers and how to get back on my feet. And this is exactly what I am doing!
Along my journey, I have come across countless women who have long suffered from chronic symptoms and simply felt dismissed. Oftentimes, it starts as one irksome symptom only to morph into a seemingly unrelated list of medical ailments. They feel scared, overwhelmed, and hopeless. Just like I did for so many years.
For those of us dealing with autoimmune disease, and those numbers are startling high, the journey towards healing is a daunting one. It’s like walking into the unknown without a compass or a map. I am here to tell you I want to help. If you’re suffering at any level, at whatever point in your journey, know that you are not alone. I see you and I send you so much love.
I am passionately committed to helping people find answers to their mystery symptoms and live a full and vibrant life again. I am living proof that it can be done!
As Buddha says, “Without health life is not life; it is only a state of languor and suffering.
I encourage you to never give up on yourself no matter how hard things get, to listen to your body and allow rest, and to give yourself grace. Maybe right now you just need to know you aren’t alone. Or maybe you are ready to begin the process of healing. No matter where you are in your journey, I would love to hear from you and how I can best support you.
