The Invisible Struggle – Finding the Root of My Autoimmune Disease

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The Beginning…

Finding out you have an autoimmune disease – or a chronic condition of any kind – is a blow. There is no escaping the sudden feeling of having something “wrong” with you. My diagnosis of CREST syndrome, also called limited scleroderma, came at age 13 when what I wanted more than anything in the world was to just feel normal.

My autoimmune story began in the fall of 6th grade when I was brace faced, awkwardly taller than most boys, and completely unsure of myself. I walked into the house after swim practice and my mom asked why my toes were completely white. I shrugged and told her it happened all the time. I held out my equally cold hands and said, “Look, my hands only start at white before they turn purple.” I laughed. She was not as amused.

The quest for a diagnosis began that day and lasted for 2 years. I felt like a human pin cushion and I was rotated on a variety of steroids, blood thinners and anti-inflammatories. I felt hopeless until a physician noticed the change in my facial appearance as a result of tightening skin (scleroderma is an autoimmune disease affecting the connective tissues so tighter skin is a symptom). He walked in to the exam room after not seeing me for a year, took one look at my face and declared that he knew what the issue was.

The next decade, following that diagnosis, I became a regular at the children’s hospital. The only saving grace during this stressful time was getting to interact with some pretty amazing kids since I remained in pediatric care through age 18. Sidenote: Sincere apologies to any kiddos who got to the Highlights magazine picture hunts after me. This was pre-smart phone days, and they kept me from losing my mind when I waited for hours between CT scans, pulmonary function tests, and echocardiograms… to name a few.

To this day, I choose to believe the care team was doing what they thought was best for my illness. I made a commitment this past year to not place blame or hold on to anger in my life, and it absolutely applies here. I underwent every test recommended, tried every drug prescribed, but the truth is I never got better. I got worse. I grew more fatigued, more anxious, and as a result, I emotionally cocooned.

My symptoms worsened and more symptoms began to appear when I went to college. I suffered from brain fog, hair loss, increased anxiety, and an inability to concentrate. I went from being an honor student in high school to getting my first C in Chemistry freshman year. The shame from this shift in performance began to weigh on me. My academic prowess was part of my perceived identity so I felt completely lost. This was right around the time I developed an eating disorder  which was clearly NOT a coincidence.

The invisible years…

The mystery, the ambiguity, and the gray environment in which it is seemingly impossible to either black or white is the hardest thing about having an autoimmune disease. The illness, the suffering, and the jail cell you are confined to both emotionally and physically, are virtually invisible. A proper diagnosis can take years. Some people, including medical professionals, will think you’re crazy. Some people may even vocalize their lack of understanding with classics such as “at least it’s not cancer,” “are you sure it’s not all in your head,” and my personal favorite which pertained to scleroderma specifically: “I heard you won’t get wrinkles, that’s awesome!” I honestly can’t blame these people. Yes, it displays a lack of tact.  But the truth is that so little is known about autoimmunity that it leaves people with very little to go on in order to form an opinion or even be informed at a basic level.

I began to believe I might be crazy, at least a little. I was always accused of being too sensitive by my family and maybe this was the case. Maybe I just needed to keep it together, keep my feelings and concerns to myself, and push through it like an “adult.”

This is what I did. I learned to put on a mask. I appeared to have it together. Meanwhile, I was dying inside, both literally and figuratively.

My turning point… the big A-HA

It was not until 2 decades later, after being diagnosed with an additional autoimmune disease that I began to take responsibility for learning more about autoimmunity. My routine bloodwork came back at age 24 indicating hypothyroidism. This explained the hair loss, brain fog, inability to concentrate, and fatigue. My physician put me on Synthroid and called it a day, but several years later, after increasing my dose every 3-4 months, I saw no signs of improvement.

Around this time I had just finished business school and was playing around on Google one evening as a means to fill my previously packed schedule. I didn’t embrace my alone time as I should have back then, but in this case it was advantageous. I came across the American Autoimmune Related Diseases Association (AARDA) website. Some facts I came across on their site which jolted me out of my complacency with “being sick” for the rest of my life are:

  • 50 million Americans (roughly 1 in 5) suffer from an autoimmune disease.
  • Autoimmune diseases affect women 75% more than men AND are a top 10 killer of women under 65. They are also the 4th largest cause of disability among women in the US.
  • There are over 100 autoimmune diseases and the list continues to grow.
  • The average time to diagnose an autoimmune disease is 4.6 years.
  • Autoimmunity, unlike cancer, is not currently accepted as a category of disease by the medical community.
  • The estimated annual direct healthcare cost in the US for autoimmune diseases is >$100 billion.
  • Autoimmune diseases tend to cluster in families.

I personally did not make the connection to my family medical history until I read these facts and began asking questions. Knowledge truly is power. My maternal grandmother and two of my aunts suffer from hypothyroidism and at the time my brother had recently been diagnosed with Type I diabetes (which YES, is autoimmune). This is what the AARDA website refers to as “clustering,” and it became blatantly apparent to me that this was the case in my family. It would not surprise me if additional family members have conditions that they are likely suffering from but are unaware of.

Have you ever picked a loose paint chip off a wall? It can be frustrating, but once you get a solid grip, you can start peeling back a large sheet of paint to reveal what lies beneath. That’s how my quest for answers felt. It started with a few facts that piqued my interest and ended up revealing an entire movement within the medical and wellness community. A movement that I was completely unaware of. This discovery completely transformed my life.

I found a functional medicine office in the area and during my first visit was asked when I got diagnosed with Hashimoto’s. “What’s Hashimotos?” I asked, perplexed. The nurse practitioner shook her head and said, “I assume you were told you had hypothyroidism then. Hypothyroidism is just the clinical state your body is in. The real issue is that your immune system is attacking your thyroid. This is a disease called Hashimoto’s Thyroiditis.” She recommended I read Hashimoto’s Thyroiditis: Lifestyle Interventions for Finding and Treating the Root Cause. I immediately ordered a copy on Amazon and finished it by the end of the week. The author, Isabella Wentz, wrote the book as a result of her own battle with Hashimoto’s so I felt an immediate connection with her. It’s not a book you can digest in one sitting, but it immediately captured my attention and got my wheels turning.

I was 30 years old. I had spent almost 2 decades thinking there was little I could do for my condition aside from taking medications that made me feel sicker. This was the first time that I considered the option of addressing the root cause, not simply treating the symptoms which posed issues in my daily life. I was done putting a band-aid on my latest symptom. I wanted to dig deeper and uproot the dis-ease.

Dr. Wentz shared a crucial theory about autoimmunity on her website that she learned at a “Gut, Brain and Autoimmune Disorders: The Role of Food” conference in Los Angeles. This theory, or the autoimmune equation as I like to call it, suggests that 3 things needs to be present for an autoimmune condition to develop:

  1. Genetic predisposition
  2. Triggering agent (includes mental and emotional trauma)
  3. Leaky Gut (common term for intestinal permeability)

OMG! Everything suddenly made sense. Feeling like you’ve been swimming upstream for 20 years then suddenly experiencing the ease and trust to let yourself flow with the current is indescribable. I decided the day that I read this that I would do whatever necessary to heal my body and my mind. Suddenly healing felt possible where in the past I considered treating symptoms to be my only option. I had a lot of work to do, but I had the answer which created the most important component for my mission to heal: PURPOSE. I wanted to heal, I wanted to learn and grow in the process, and I wanted to advocate by giving a voice to the voiceless sufferers of autoimmune disease.

My Struggle Became my Passion…

I will share more about the steps that I took to become an advocate for my own health, books/resources that helped me to better understand my condition, resources that will help you connect with a functional or integrative physician, and programs that I took part in to help me heal my gut and drastically reduce the severity of my condition. My journey involved (and continues to involve) working through the main causes of stress in my life which include perfectionism, people pleasing, unhealthy coping mechanisms, and a lack of self-compassion and self-worth. Separating the physical from the emotional is not an option when dealing with autoimmunity.

I would never recommend something I didn’t try on my own as I have no wish to waste anyone’s time. We all have a unique journey and I hope that my experience resonates with you, and more importantly can help empower you to discover your own path to healing.

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