Admitting to Autoimmune Disease

Speaking My Truth

We are regularly given suggestions, guidance, and words of advice. These may come steadily from friends and family, or they may pop up randomly through signs in daily life. No matter how these pieces of information arrive, we often choose not to hear them. Or, perhaps, they simply don’t mean anything to us at that time. But, circumstances shift, timing changes, and suddenly – they mean everything. Ever since starting the Integrative Health & Healing degree program at The Graduate Institute in fall of 2010, I have been hearing the message “Live Your Truth.” However, it wasn’t until more recently when that message shifted a bit to “Speak Your Truth” that its meaning really spoke to me (pun intended).

Give ‘Em What They Want

In my work as a freelance writer I am often in conflict with what I think, what I really want to write (or say), and what I ultimately do put out to the world. This conflict is natural when writing for a living because so much of expression is hindered by what a client wants, or what works from a marketing perspective. You learn to give people what they want and tell them what they want to hear. But, I’m finding that compromise to be increasingly difficult in my work and my personal life, particularly since I finally recognize that when your mind and spirit are not in agreement it often results in tension and illness in the body.

“Happiness is when what you think, what you say, and what you do are in harmony.” – Mahatma Gandhi

Sick of Being Sick

This knowledge has shifted my perspective, and suddenly the timing is right for me to both live and speak my truth. That is why I have decided to launch this website, and in effect finally come clean about something that I had largely been keeping under wraps – my autoimmune diseases. I have been sick for over a decade, and, I’m sick (pun again intended) of making apologies for that fact, or trying to hide it from the world.

The Diagnosis

In one of life’s great ironies, I was first diagnosed with autoimmune disease (Hashimoto’s Thyroiditis) after graduating from college with a degree in nutrition. I was dedicating my life to a career promoting health, yet, at just 22 years of age I was told that I myself was not healthy. Of course I knew that already, as I had been struggling with all the classic symptoms of low thyroid – fatigue, weight gain, dry skin, coarse hair, low blood pressure, puffy face, intolerance to cold. But, getting a diagnosis was a double-edged sword. It was wonderful to finally know what was wrong with me, and to be told that just taking thyroid hormones for the rest of my life would remedy the situation. (It didn’t, and doesn’t for most people with a thyroid condition caused by autoimmune disease, but I’ll have to reserve that lesson for future posts). I was grateful too to have caught the illness early since that is a rarity. Had I not been fortunate enough to see my mother’s endocrinologist for that fateful visit, I would have gone on thinking the fatigue and brain fog I lived with were normal. However, being told you will be sick FOREVER is a bit daunting. And, at 22, it was pretty darn easy to just tuck that piece of information deep inside. Sure I told friends and family, but I didn’t truly understand how insidious autoimmune disease could be and I certainly didn’t make it public knowledge.

Hashimoto’s Thyroiditis

Since Hashimoto’s is an autoimmune disease, it meant that my body was slowly attacking and destroying my thyroid gland. In retrospect the diagnosis wasn’t especially surprising since my Mom also had that genetic illness.  Genes alone don’t predict if someone gets autoimmune disease, but having them present makes it easier for fate to step in. When it comes to autoimmune disease, fate can be triggered by a great many things – toxins, stress, viruses, hormones, nutritional deficiencies, etc. There are probably as many causes of autoimmune conditions as there are types (over 100). Personally, I suspect that I had low vitamin D levels as the product of living in the northeast (RI). In addition, as a teenager I ate very poorly, constantly dieting and restricting my fat intake, more importantly, I was a classic overachiever participating in multiple sports while juggling jobs and honor’s classes. That stressful combination, teamed with the hormonal changes of puberty, left me at a greater risk for illness to set in during my teens which is when I suspect I actually developed the disease.

The Emotions of Diagnosis

Although receiving a diagnosis can be a relief, it can also stir up a flurry of negative emotions. For me, Hashimoto’s was just the beginning. As is often the case, autoimmunity can spread to other parts of the body, and my condition did indeed spread to my mucous membranes in a condition known as Sjogren’s Syndrome, and then to my digestive tract via gluten intolerance / Celiac Disease. With every diagnosis came more emotional turmoil. Here are just a few of the painful emotions that I have struggled with:

Denial – As mentioned, after my initial diagnosis I went on living status quo. I didn’t significantly change my eating patterns, or aim to reduce my stress levels. I functioned under the knowledge that there was nothing I could really do about my condition other than take thyroid hormones as my doctors had suggested. But thinking that way was a true form of denial. We ALWAYS have other options for health improvement. We don’t need to accept a diagnosis and just pop a pill. I know that now, but first accepting the reality of illness was important. Once I acknowledged that something was wrong I could take truly proactive steps to fix it.

Guilt – At times I was consumed with guilt over having illness and it certainly made denial easier. I worried that I caused my autoimmune disease by not eating well as a kid or by dieting all through high school. My love for junk food, certainly a contradiction to most nutrition purists, made me question my right to ever give nutrition advice, and that struggle was one of the many factors that ultimately caused me to leave the field of nutrition counseling to venture into health communications where my messages could be more subtle. Guilt comes and goes for me now. I like to remind myself that there is a higher power involved in all things. I don’t have control, so the only choice is to surrender to my path. Besides, while I do believe that nutrition can do wonders, it is just one piece of the health puzzle. There are so many other means of achieving health that focus on healing from within by encompassing the mind and spirit.

Shame – Given the often insidious nature of autoimmune disease, I would have high and lows in my health. The highs were of course wonderful, but the lows were a period of shame and disappointment. What had I done wrong? Maybe I didn’t get enough sleep, or I tried to handle too many projects. When the doctor declared negative blood test results or shook his head not knowing why things had changed, I ultimately blamed myself. After all who is more responsible for this body than me? But, life is more complicated than that. There are environmental factors that are completely out of my control. I don’t need to own everything. As with guilt, surrendering to a higher power and acknowledging that there will be good and bad days was the only way to let that negative feeling go.

Fear – Illness is scary, but the irony is that fear makes us sicker and sicker. It consumes us with negativity. My fear was multidimensional. In addition to worrying about what was happening to my body, I also worried about every aspect of my personal and professional life. I feared that people would judge me as a shoddy dietitian if I couldn’t even keep myself healthy. I feared that people would see me as less than I really am. I worried that if people realized I had a chronic condition that it would slam the door on various opportunities in career, education, even friendship. I worried that potential employers would question my capabilities thinking I was not a good worker or the best health writer for the job. Or, worse that people would label me as a “whiner” because they couldn’t fully relate to the challenges I experienced, or the many ways in which I work on bettering myself and my situation every day. Fear is an enemy I continue to battle, but I have many resources now to tame that beast – mantras, qigong, journaling, meditation, gratitude. When fear arises I counter it with joy because the two have trouble coexisting.

What Chronic Illness Creates

My reality of course is far different from any of the aforementioned negative emotions or judgments, as I suspect is the case for many women who go about their days keeping their illness under wraps. Illness has forced me to become incredibly efficient and savvy. I know how to maximize my energies and talents in ways that healthier individuals often don’t – mostly because they don’t need to – but also because they haven’t learned how to truly embrace their abilities and use them with a passion and appreciation. In short, I am actually smarter, more compassionate, more driven now than I was before my diagnoses. I can actually see illness as a gift, a wake-up call that forces me to live life to its fullest.

My Truth

The years since diagnosis have been rocky. I have watched my thyroid levels teeter back and forth leaving me exhausted one month, and riddled with anxiety (a symptom of hyperthyroidism) the next. I continue to struggle with fatigue and problems with digestion. And, naturally I have bad days where life just doesn’t seem fair or even tolerable. But, overall I know I am a better person every single day. If you consider an illness to be your rock bottom point, there is nowhere to go but up! And I am dedicated to the climb. I hope you will want to join me by following this blog, and the evolution of this site. My truth now is that “I am a Happy Health Her.” I hope yours is too!

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