The Invisible Illness
Living with Autoimmune Disease(s)
I feel like I’ve been sick my entire life. Not the in-hospital with incurable condition kind of sick — the can’t really do much but stay in bed all day and heal kind of sick. Although my symptoms are rarely deemed “bad enough,” to merit missing as much school, work, and life, as I have, they influence my ability to be a normal, functioning human being. These days, they range from chronic fatigue and dizziness to digestive upset, constipation, joint pain, depression, cystic acne, dry skin, and heavy, painful periods. Because my illness(es) have never presented in a way that are easily diagnosed or treated, I fear becoming the hypochondriac who cried wolf one too many times. This fear is closely paired with resentment for feeling ignored and disregarded by the medical community. I know it’s not all in my head, and I have found those who are willing to listen, but I still can’t shake the feeling that if my condition isn’t known or visible to the rest of the world, it’s notvalid.
I have struggled with autoimmune conditions since I was a wee infant. I was born with asthma, which I (luckily) grew out of by my second year. During my childhood I constantly swung between two extremes. I caught anything and everything that I came into remote contact with, and then stayed sick for weeks to months on end. Sinus infections, strep throat, mono, bronchitis, and nasty head colds were monthly occurrences. All treated with round after round of antibiotics, which I now know further debilitated my struggling immune system. Finally, an allergist prescribed me a medication used to treat autoimmune respiratory conditions, and my body seemed to stabilize, for a time. Once the constant sneezing, coughing, fevers, body aches and sore throats dissipated, the faculty at my schools, my friends, and even my parents started taking my conditions less seriously.
In high school I was diagnosed with Irritable Bowel Syndrome, or IBS, joining 10–15% of Americans who share this common digestive disorder. I had this running joke with my friend group that I would always get pregnant after eating. The bloating never affected my weight, but always lasted for hours on end in an uncomfortable distended abdomen. I yo-yoed in and out of different elimination diets and holistic medicine practitioners. Taking everything from medication for Crohn’s disease to herbal tinctures to try and mitigate my symptoms. Of course, my “IBS attacks” as my family called them, only grew worse, eventually morphing into undiagnosed panic attacks that sent me to the ER on more than one occasion. After running every test that he could fathom, the doctor finally just gave me a Vicodin prescription for the pain and sent me home. At that point, I was beyond frustrated and starting to feel hopeless.
The panic attacks morphed into depression and anxiety in college, while the IBS took a sort-of backseat. My weight ballooned as is par for the course when you have an all-you-can-eat meal plan paired with the stresses of a new school across the country. My elimination diets and herbs went out the window, and I started taking anti-depressants, which were originally prescribed to treat my IBS. My immunity was taking another hit because of all the crap I was eating, and so the debilitating respiratory infections returned, coupled with a strong desire to never leave my bed. Finally, I sought out talk therapy and began the journey towards understanding that what I’m feeling and experiencing is valid, and that if I wanted clarity, I needed to start searching for my own answers.
Finally, Some Clarity
This past November I was diagnosed with Hashimoto’s Disease, or Lymphocytic Thyroiditis. The diagnosis itself felt like a Godsend. To actually have a name to corral my various symptoms underneath, was reassuring in a way I had always craved but never received. A real doctor was sitting across her desk from me, validating my experience, telling me that I wasn’t crazy, that there was, in fact, something very wrong with how my body was functioning. Hallelujah!
For those of you who don’t know about Hashimoto’s, it’s an autoimmune thyroid condition where your trusty immune system recognizes your thyroid gland as an antibody, and starts attacking it — thereby hindering its ability to produce the hormones your body requires to function properly. It’s a particularly sneaky bugger because it’s so hard to diagnose, and symptoms present differently across individuals. They can range from hair loss to issues with memory, joint and muscle pain, fatigue, depression, feeling cold constantly, gaining or losing weight, constipation, and even nodules on the thyroid gland at the base of the throat. For more info on Hashi’s and other thyroid conditions, check out stopthethyroidmadness.com.
Still, even with a diagnosis and a treatment plan, I’m struggling. And the way I’m struggling is not openly apparent to the rest of the world. I’m tired to the point of feeling like I can’t get through the day without a mid-afternoon, or even mid-morning, nap. I get dizzy and nauseous if I take my cornucopia of supplements too far away from meals, or I forget to eat for more than three hours at a time. I still have extreme bloating, sluggishness, and digestive discomfort. My skin still features many an angry red spot that doesn’t seem to want to heal anytime soon. My anxiety is still crippling some days. Less than before, but noticeably still there. No, these are not all debilitating, but they make everything that should be easy harder.
I’m sick, and I shouldn’t have to prove that. I should be able to ask for help and be taken seriously in that request. I should feel valid in determining what kind of work and lifestyle choices I make according to my symptoms. Just because you can’t see it, or have any idea what it feels like, doesn’t mean that I’m making it up, or that I’m using it as an excuse to be lazy. I am not whiny. I am not crazy. I am ill.