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My Invisible Illness

Growing up, I was a healthy child. I only went to the doctor for check-ups, vaccinations and school forms.

So when, at age fourteen, I woke in the middle of the night in excruciating pain and crawled into my parents’ bedroom to wake them to take me to the emergency room, I wasn’t prepared for what awaited on the other side of those sliding glass doors.

My experience was like a medical TV-show montage—bright lights, beeping monitors, medical professionals hovering over me and talking incomprehensible jargon, soft cries from patients in surrounding rooms, concerned looks on my parents’ faces.

There was the bitter chill in the air, the sterile smell, the scratchy blanket on my body, the metallic taste in my mouth from the saline IV, and the feeling of immobility as I was carted from one machine to the next, being told to remain still for imaging while every ounce of me wanted to curl up in a ball and hide.

Looking back, the medical testing was only half the battle. The other half was the waiting—the what-ifs, the Google searches, the doomsday prepping.

Then the results came back.

“Negative,” said the doctor, sounding optimistic. “Everything came back negative.”

This should be good news, right? I wondered, hearing the word and knowing that I should feel good, but feeling—well—negative.

On one hand, “negative” meant no life-threatening illness, but on the other, it meant no answers, which made me question what was meant by “life-threatening.” Was I at risk that my heart would quit beating or my lungs stop breathing? No. But I was at risk for questioning my own sanity and losing the ability to function day to day, to feel meaning and joy. My life was threatened, just not in the ways we’re conditioned to believe are urgent.

I was set on a new path, with the hope and expectation of a cure, a treatment or simply an answer.

Seeking these, my doctors engaged in trial, error and a never-ending routine of testing and re-testing. For my part, I had to track how I felt and when I felt it, to help them figure out possible causes.

I lived through a year of this before I finally heard: “It is this. You have endometriosis.”

Endometriosis is the presence of endometrial-like tissue elsewhere in the body. It latches onto organs, creating adhesions and scar tissue that can cause pain and infertility. A sneaky, invisible disease, it doesn’t show up on tests or imaging and can only be properly diagnosed through surgery.

That diagnosis felt like a giant embrace, a breath of fresh air and a warm chocolate-chip cookie all in one.

I didn’t make this up! My pain is valid! My pain has a source! I exulted—then came down to earth, realizing: My pain cannot be cured.

In that moment, I earned my “chronic” badge of honor. I was suffering from an illness that impacts so many, yet is widely misunderstood and mistreated.

I received hormonal therapy—believed at the time to diminish the disease, reduce symptoms and allow the patient to resume normal life. When my pain continued, my doctors threw up their hands and placed the blame on me.

The following is from my medical records, written by the lead doctor managing my pain.

“I noted that a large behavioral component to her complaints was reinforced today by yet again seeing that despite the fact that she feels so terrible, she is made up extremely nicely, has lots of energy and appears perfectly comfortable and moves very freely. If she is not willing to take the psychology course seriously, then she is wasting everyone’s time.”

This doctor, like many others, had trouble recognizing invisible illness. He fixated on what he could see (the makeup on my face), disregarding my verbal cues. He didn’t consider that I was a fifteen-year-old girl who’d lost control of her entire life and found comfort in controlling her appearance—or that I could “move freely” because when you’re living with pain, you simply don’t have a choice.

And what I didn’t realize until much later was that, in that moment, I didn’t stand a chance.

Medical records travel with you from doctor to doctor—a breadcrumb trail that makes it nearly impossible to visit a doctor who’ll have no preexisting bias. This situation continued until my senior year of high school, by which time I completely mistrusted both myself and medicine. In my mind, I had one option: to run.

I felt I had nothing to lose, and that I’d make my doctors’ lives easier by simply disappearing from their caseloads. I successfully tapered myself off of all twenty prescription medications I was on and did my best to fake wellness until graduation.

Heading off to college, I excitedly told my mom that this was my chance to start over. I was determined to hide every ounce of my illness from my new friends.

I’m not going to be the “sick kid,” I vowed. If I’m supposedly capable of making up illness, then I can also make up wellness.

I dabbled in every form of holistic care: acupuncture, chiropractic, energy work, supplements, reiki—anything that didn’t involve entering a doctor’s office or a hospital and that gave me a (false) sense that I was taking care of myself. This lasted ten years. Ten years of ignoring every signal my body sent, until the signals got too loud to ignore.

At that point, I went back into psychotherapy, fearing that there was something deeply wrong with me that I couldn’t simply be well. After a few sessions of reciting my history, I heard these words, spoken by my therapist, for the first time:

“What you experienced was traumatic.”

My eyes welled up.

“I’ve never heard it described that way,” I said.

That moment started me on a path that I never could have imagined–one that took me from a career in fashion to pursuing a master’s degree in clinical mental-health counseling, hoping to offer others the same validation that my therapist had given me. I began to take back ownership of my health and wellness.

Slowly but surely, I started seeking medical help and discussing my case with the specialists I found, who have surprised and delighted me with their bedside manner, deep understanding of the disease and unwavering empathy.

I can’t say the road has been easy, but it has offered continual reminders that I didn’t make any of this up, and that what I’m managing is hard. Admittedly, since that moment with my therapist I’ve had two surgeries, with one more on the horizon. Although that isn’t my ideal scenario, it shows my growing ability to manage my medical trauma and regain some trust in medical professionals.

And though I’m unsure that a cure will emerge anytime soon, I’m hopeful that it will eventually be found. So I’ll continue to put energy into research and advocacy—for myself and for every other person, now and in future, who might be plagued with this invisible illness.

Leah Able is pursuing a master’s degree in clinical mental-health counseling. She lives in Cincinnati with her husband, two-year-old daughter and two rambunctious but lovable dogs. “My early experiences with medicine led to years of avoidance, mistrust and self-destructive coping mechanisms. Psychotherapy helped me to understand the role that chronic pain and medical trauma had played in my perception of the world. I hope that readers will view my story as a cautionary tale about what can happen when medical trauma is present, pervasive and untreated.”

Comments

11 thoughts on “My Invisible Illness”

  1. Lowell McCauley

    Sadly, women of all ages have to go through 5-6 “providers” before anybody considers endometriosis. This is so sad and I am embarrassed for my profession for not being more aggressive in pursuing this diagnosis. It’s so common that it should almost be the first thing that is considered in an adolescent whose pain experiences change suddenly with puberty. All I can say is that this doesn’t happen in my practice. I have all too often said this might be the case only to scope them and find I am right. Although doing a scope on a 14/15 yo girl is not desirable, it sure as hell beats her losing the beat years of her life.

  2. Sara Ann Conkling

    There’s such a thin line between “your pain doesn’t matter” and “you don’t matter” — and that line so easily evaporates in our consciousness when we are medically gaslit. No one deserves to feel that their suffering means nothing to people who are supposed to be trying to help. As patients, we need to be as willing to fire physicians as we are willing to fire anyone else who is a paid service professional refusing to do a good job. That said, I’ve also found that when a physician can own up to a mistake, there’s a chance for a better relationship going forward. The key is whether the physician takes responsibility for the mistake, and also, for making things better in the future. I once had a physician say to me “I didn’t take good care of you.” He was referring to the aftermath of a medical mishap that he didn’t cause, but he could have helped me in the aftermath. He is still my physician, over 20 years later. I haven’t had anything but excellent care from him since. But he is also, unfortunately, the outlier. I’ve had to fire a few other physicians. I do so courteously, and if they want to know why I’m firing them, I tell them. I’m not surprised anymore if they continue to try to gaslight me even after they are fired. Disappointed, but not surprised. Medicine is the only profession where someone can be incompetent and still practice and make the same money as if they were competent. It’s a travesty.

  3. How wonderful to read of another woman’s struggle to find alternatives to standardized medical treatments. Traditional medicine so often treats you like you have a mental illness, if your symptoms cannot be pegged into one of the standard diagnoses. After having spent 3 months in ICU paralyzed and on a respirator, the Rehab Hospital never considered I might have real physical pain residuals from the rare illness I had. The attendants, who transferred me in and out of the bed to the wheelchair, would sort of toss me like a sack of potatoes, with no feeling. They were used to stroke patients with little to no feeling.
    On the other hand, I was HyperSensitive, in a lot of pain. I had to convince the Psychologist of this before they admonished the attendants to be gentler in their handling of my body.

  4. Leah…
    Being friends with your parents, I already knew the facts Hearing your story in your words, with your reactions and reflections, took it to another level. As an advocate for yourself, you are fully equipped to help others navigate such painful and confusing real medical issues. I wish you much success in this endeavor and, most importantly, good health and general wellness.
    Hugs
    Anita Schneider

  5. You touch on so many of the difficulties of having an “invisible illness,” particularly within our medical system. “You don’t look sick” is a common refrain for those who may be suffering. I’ve shared your essay widely. I have no doubt it’s been painful to bring up all these memories. May you continue to have a more supportive medical team.
    Mimi Emig

  6. “Medical gaslighting.” It happens so often to women. I was subjected to it as a patient and as a mother of a child with what turned out to be a brain tumor. I’m so sorry it happened to you, Leah. Thanks for sharing your story so others will be aware.

    1. Leah,
      My daughter had abdominal pain that was so bad, she dropped out of college to come home and curl up in bed all day. A competetive athlete, she could not even stand up straight. Like yours, all her medical tests came back “negative.” After reading the first two sentences of your story, i recognized the situation as endometriosis.
      It took us two years to get the diagnosis, and at least two more years to get her stabilized and pain free.
      It is all too easy for medical personnel to brush off complaints like excruciating pain in women, and especially teen aged women when the usual tests don’t show anything definitive, instead of looking harder for something less usual. I’m glad you were finally able to get the help.you need.

  7. Although I never suffered anything remotely as devastating as you have with endometriosis, I’m familiar with the sorts of belittling and flat out negating you met with. With fibromyalgia, invisibility meant I was given meds that had no effect, I was told I should consult a psychiatrist, I was told there is no such thing. With various injuries, I was told it wasn’t all that bad, I wouldn’t be able to have a career that kept me in my feet, just live with it. What saved me, again and again, were thoughtful, attentive physical therapists and insisting that I know my body. Your essay is a terrific argument for standing up for oneself, for not assuming that all doctors know best, for being proactive and assertive about one’s health.

  8. Hi Leah – thank you for sharing part of your story. A friend sent me a link to your article. My experience mirrors yours similarly. Eventually, I received a definitive diagnosis at age 36 that I had been living and suffering through endometriosis (then at stage 3) for 20+ years. It was validating, sickening, terrifying and confusing. I’m sorry you’ve also been through it. Hugs.

  9. How brave you are! Despite the doctors’ reactions, you listened to your body and heard its message—something was wrong. You prove that we are responsible for our health. You prove that doctors are human beings, not infallible gods. I am proud of you, just as you should feel self-pride. Take care, stay strong, and continue to heal.

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