I have a chronic illness, and I am grieving.

A friend recently shared her journey through grief in accepting her autoimmune diagnosis and chronic illness. She inspired me to do the same, because I am grieving. In gaining this diagnosis, I lost my health. I lost the life I am accustomed to living. I lost who I am, but then again, maybe I didn’t. 

More mountains, less fatigue, please.

In my last update, I shared my latest adventure: a 50K on the autoimmune protocol. I felt good, invincible even. The week after the race, remnants of my old, energetic self broke through the fog and fatigue. Vacuuming my apartment didn’t exhaust me. I was able to stay focused on a task for more than 30 minutes. My mood stabilized. I felt good.

And then I didn’t.

Symptoms returned.

Getting out of bed became a chore. Food prepping was more exhausting than a long run. Running felt forced and sluggish. My mood resembled an EKG, jolting from joyous to irritable to sullen. My thoughts were scattered and my mind encased in a dense mesh. I had plans. I had ideas. I wanted to get to work. And yet, simply preparing myself dinner felt insurmountable. I slurred my speech (one of my stranger autoimmune symptoms) and lost any sense of balance. My anxiety returned, accompanied by a sense of isolation and deprivation. The life I used to live – an energetic, predictable, fast-paced life – once again slipped through my fingers.

I was in the midst of a flare.

Many things could have contributed to this flare: Returning to my regular training load, racing a 50K, traveling for a conference, reintroducing black pepper, starting thyroid hormone supplementation.  A lot was happening, and I expected my body to keep up. I thought I’d been doing everything right. I took time off post race! I’d been on the autoimmune protocol for 30 days! I was doing acupuncture! And meditation! Surely, I should be healed by now.

Unfortunately, chronic illness does not operate on my timetable.

I cringe at those words, chronic illness. It feels like an overreaction. A plea for attention. Something only a hypochondriac would say. It oozes with high-maintenance and inflexibility. Cool girls don’t have chronic illness. Ultramarathoners don’t have chronic illness. Twenty-something women who eat organic vegetables and use paraben-free shampoo don’t have chronic illness.

And yet, I do. I have a chronic illness. I have an autoimmune disease. My body is destroying itself, forcing me to recalibrate my lifestyle, goals, and choices. My life will never be the same, and I am grieving.

When the weather matches your mental haze.
First, I was in denial.

I received this diagnosis last fall, but it took months for me to acknowledge its severity. I lived in denial, blaming everything but my health for its own decline. After years of being denied this diagnosis, of being told I simply run too much, eat too little, have a “sluggish but normal” thyroid, am too perfectionistic, have too high of expectations, burn the candle at one too many ends, I grew to believe these assumptions. Maybe my expectations were too high. Maybe I was running too much. Maybe this is my fault. Maybe it is all my head. Maybe it is normal to feel this way.

And then I grew angry.

Because it isn’t normal to feel this way. It isn’t normal for a young, active woman to struggle to get out of bed. It isn’t normal to end up in the ER in anaphylactic shock from something you’ve eaten all your life. It isn’t normal to take days if not weeks to recover from a single workout.  

And to feel normal? Hours of doctor’s appointments, countless vials of bloods, an intense dietary protocol bringing me nose to nose with my eating disorder. Weeks of new seemingly unrelated symptoms, things I kept to myself for fear of seeming over-reactive or melodramatic. Sadness. Isolation. Hopelessness. There is no cure for autoimmune disease. There are no easy treatments or ways to address its root cause. Once you develop one, it becomes much, much easier to develop another. You are left, flailing, dozens of supplements in one hand, fingers crossed in the other, waiting for the next unexpected symptom or autoimmune disease to hit.

I’m angry with the many doctors and specialists who provided a misdiagnosis, handed me prescription medications without digging deeper, shrugged off my complaints, or declared every ailment an outcome of “running too much.” I’m angry with society for encouraging me to compare myself with others, to run bigger miles, weigh fewer pounds, collect more accolades, sleep less and do more. I’m angry with the #fitspo movement and feeling inundated with alluring diets, fads, and “self-care” movements that resemble religion.

And, I’m angry with myself. Angry for falling into these traps. For allowing stress and anxiety and perfectionism to consume me until I am left ragged and bare. Vacant and overwhelmed. Always wanting more.

Initially, my denial and anger were intertwined.

While I know I didn’t do this to myself, I do believe my past behaviors and lifestyle contributed to triggering my autoimmune genetics. You can’t develop an autoimmune disease unless you have the genetic predisposition for it; environmental triggers (combined with intestinal permeability) can turn that genetic expression on. I believe my environment turned it on. There are studies linking my particular illness, Hashimoto’s thyroiditis, with food restriction and eating disorders, likely because restriction can wreak havoc on your gut health, adrenals, and hormones. After receiving my diagnosis, I sought control. I sought answers. I wanted someone to blame. So I blamed myself. I have a history of disordered eating and addiction to exercise. I restricted calories for years. I exercised obsessively. I didn’t take care of myself. I caused my Hashimoto’s.

While identifying the root cause of my autoimmune disease isn’t this simple, I found solace in having just one direction to point my finger, especially when that direction was toward myself. I channeled my frustrations, anger, and grief inward, prompting a vicious cycle of self-loathing, criticism, and doubt. It was exhausting.

I am still tired.

I am tired of being tired. Tired of the exhaustion and fatigue. The apathy and instability. The isolation and depression. The sense of deprivation and anxiety. I am tired of feeling unsettled, uprooted, and unsure of myself. But within these flares, within these question, I am finding one answer – my health is sacred. This body is mine, and it is up to me to take care of it. I have an autoimmune disease, and while I can’t control that fact, I can control what I do about it. 

I am learning. I am grieving. And, finally, I am accepting.

I have an autoimmune disease.

I eat organic vegetables, use paraben-free shampoo, run ultramarathons, and have a chronic illness. I’m recalibrating. Each day is an opportunity to shift my expectations, tune in to my body, and practice patience. During this initial phase of healing, my priorities are evolving. My goals aren’t finish lines, heavy training weeks, or big writing projects. They’re smaller: going for a walk, prepping meals for the week, practicing patience and self-forgiveness. I’m moving slower, both physically and mentally. I’m saying no and honoring my limitations. I’m creating space – space to heal, space to grow, and space for this new aspect of my world.

This is my new reality. It is no longer just me. It is me and my autoimmune disease: me and my Hashimoto’s Thyroiditis. Life is changing – it always does – and I’m changing with it.

Doing what I do best: keep moving forward (albeit at a slightly slower pace).

5 thoughts on “I have a chronic illness, and I am grieving.

  1. Hello, We haven’t met but I am a friend of your mom and grew up up in Columbus.
    I was diagnosed with a chronic illness in 1985. Reading your blog entry took me back to those first few months. I went thru all the stages you are going thru. I struggled with anger and grief for a long time. I too felt as tho I had lost myself and I was so angry. I loved when you said you are creating space to heal and to grow. The biggest thing for me was to forgive myself when I couldn’t do the things I had planned to do, or when I have to cancel plans last minute with friends and family. At the beginning,I pushed myself too hard thru the flares and paid the price. Now I say no when I don’t have the energy, I don’t carry guilt or feel like I let people down when I cant do things I had planned with them. And I found that my friends and family, understand. I realized thru all of this..I am still me, a slightly different version , but still me. Its all about finding your new normal , and learning to go easy on yourself. Thank you for sharing your story.

    1. Hi Anne, Thank you so much for connecting! Yes – finding the new normal is exactly what I’m seeking right now. It’s reassuring to know I’m not alone in this!

  2. Hi Samantha,

    I also have an autoimmune disease – Sjogren’s Syndrome. My father had an autoimmune disease as well, so there was my predisposition.

    I was lucky to have a doctor who found it fairly quickly, once I shared my issues with him. I’ve probably had it for two years or so but wasn’t diagnosed until last summer. I attributed my fatigue to old age and a host of other excuses.

    I also went into denial for several months but that didn’t allow me to ignore the way I felt. This level of fatigue is simply not normal. Diet is really important as you already know. I’ve always powered through being tired and that’s just not the way to handle fatigue from an autoimmune disease. You have to rest when your body insists on it.

    I’ve long admired you and your spirit. I know you will live as well as you can with this illness. You can do it.

    Take care of yourself. I’m so sorry you are dealing with this. Susan Rayl (Taylor Smith’s mother)

    1. Susan, thank you so much! For sharing your story and the encouragement – And for reminding me I’m not alone in this. I’m quickly learning have a great doc is key, along with rest. So much rest. Thanks again!

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