All posts by Eliana Stanislawski

Eliana Stanislawski is a queer, chronically ill writer and organizer focusing on reproductive justice, displacement and migration, youth activism, and social justice movements. Her work has appeared in The Huffington Post, The F Bomb, and Worcester Magazine. Follow her on Twitter @eliana_stinky, and visit her blog at https://pleaseclapblog.wordpress.com/.

The Importance of Believing Our Pain

Muscles of the Neck and Trunk illustration via University of Liverpool https://www.flickr.com/photos/liverpoolhls/10818735423/in/photolist-hu1R86-rbDMvv-hu1YVa-6be12x-dyqq6c-dyxqVJ-dywK4L-dyqr6X-dyqoh4-dyqULz-so1j2-65EqM8-a2PQNT-26FYDXA-2415tyS-JCe16m-66SMVJ-5u8nSp-ae8Jrb-qU5VfW-htZdo8-htZXeh-b5ZsH6-bsCpDf-6SxTLU-516KD-9cZUDW-8maaza-bFvEcB-go53fY-7AJ9iS-go6gPj-edQvMt-5vnaM1-bsC2Fm-UmQNxh-fzrk7v-8mdjBy-5EAnqQ-94r6J-7MTKJ5-hfKv7f-hfLCR8-hfKuwC-hfKBAL-pS6A8B-2rJA8P-fzFwMb-hu3Wt3-fzri5P; used under a Creative Commons (CC) license.

“I wish I knew what you wanted me to do for you.”

I can’t stop playing that visit, and many others like it, over and over in my mind.

“I don’t know,” I whispered. “You’re the doctor.”

Days before, I had been held in the emergency room for seven hours after going to a clinic for an IV. My symptoms, which I had been experiencing for almost seven months at that time, had flared up so badly I couldn’t keep anything down. I could barely move or speak. I could tell I was dehydrated, so I went back to a clinic I had been to before in hopes of getting some minimal fluid in my system.

One nurse practitioner decided that day that my collapsing episodes and heart palpitations demanded a hospital visit. Immediately. Not a single doctor had recommended that before.

I agreed, because it seemed like the only way I would get my IV and I was scared.

This appointment with my primary care provider had already been scheduled because the doctor wasn’t willing to refer me to an endocrinologist and I wanted to plead my case. After my hospital visit, he had been instructed to provide me with a two week heart monitor as well.

When I arrived, he didn’t have the heart monitor and he remained uninterested in the referral.

“You’re on Celexa,” he remarked. “And I can see here you went to the hospital for mental health reasons in May of last year. Is that right?”

My stomach turned. I knew what was next.

“Yes, but my symptoms didn’t start until six months after my hospitalization. My medication has helped me quite a bit. I have a good therapist, too.”

He nodded. “Mental illness is a powerful thing. Has anything been making you more stressed lately?”

All I could say was “being this sick,” before I burst into tears.

Then the furrowed brow, sad eyes, and “I wish I knew what you wanted me to do for you.”

*

In June, I learned that I have thyroid cancer.

It started by driving an hour and a half away to do extensive testing at a specialty clinic. Then, showing my primary care doctor that my thyroid antibodies were high. He didn’t believe that merited seeing an endocrinologist, but he agreed to refer me after I was persistent enough to wear him down.

The endocrinologist said all my results were normal, except the antibodies. She gave me an ultrasound for kicks, saw some nodules, and told me I needed a biopsy but that I really shouldn’t worry too much.

Five weeks later, it turned out I had a reason to worry.

When I hung up the phone, I believed for the first time in nine months that I was not a liar.

*

My primary care doctor was not the only person who had brought up my mental health history. Virtually every single one of the doctors I saw had raised anxiety and depression as a potential source of my symptoms: fatigue, weakness, collapsing, an inability to gain weight, nausea and vomiting, dizziness, and widespread pain. Every time my tests came back normal, every time a doctor felt comfortable concluding that whatever I had wasn’t killing me, they would look at me with sad eyes and recommend I try mindfulness, deep breathing, and continuing therapy.

How could I not start to believe them?

I began to get diagnoses from some specialists. First, I was diagnosed with chronic fatigue syndrome (CFS/ME). Then, postural orthostatic tachycardia syndrome (POTS). Neither have a cure, nor a solid treatment. Neither were understood by the majority of doctors I saw. Many hadn’t even heard of them.

I grew more and more hopeless. My mind fell into two thought patterns:

What I am experiencing is not real. I have made it up for attention because I am mentally ill. These doctors see through it and I need to see through it myself. No more cutting myself slack. I need to stop pretending.

This is never going to go away, whatever it is. I need to stop searching for answers because even if something is going on, no doctors seem interested in finding out what that might be.

I had accepted my fate, but I couldn’t stop going back and forth about what the fate was exactly. I had been able to quit self harming after my hospitalization, which I had been doing for eight years, and in my lowest moments of feeling so fully unbelieved it took every ounce of strength I had to refrain from falling back into that coping mechanism.

Instead, every time I ached, vomited, collapsed, I told myself: you deserve this. This is what you get for being so sensitive. This is what you get for letting your mental health take over your body, somehow. Everyone is tired. What makes you so special?

It hurt the people around me to hear me talk about myself this way. Once, marching up the stairs to my apartment, I turned to my partner and told them I had decided I wasn’t sick anymore.

They stared back at me, unsure of what to say.

“This is too much work,” I told them. “It’s not worth it. Whatever this is, I must be making it up. So I’m done. I’m not sick anymore.”

They didn’t buy it, but I let that roll off my shoulders. I was determined to end whatever charade I was performing for myself.

That lasted about 24 hours before I collapsed in my home again. I promptly texted them to let them know my experiment had failed. We were able to laugh about it, but I was at my wit’s end. And we both knew it.

*

It is well-documented that assigned-female-at-birth (AFAB) pain has long been disbelieved and dismissed by medical professionals. Women are routinely given less pain medication. Women wait longer in emergency rooms. Doctors perceive us to be overreacting. This is only the tip of the iceberg. Being 22 years old and having been previously hospitalized for mental health issues only made me more likely to be dismissed by doctors.

I knew all of this, but it was still nearly impossible for me to believe that I had fallen into this trap. I assumed that doctors disbelieving women and citing anxiety had no reason to do so, but for me they had every reason to. I had this history that I could not escape, one that meant that my pain couldn’t be real, because up until then, my pain had lived in my mind. And the pain in my body was making the pain in my mind worse.

I thought that I must be lying, even though I was being suffocated by my condition every day.

I don’t doubt that my many doctors were doing what they thought was best for me. Many of them were kind, and tried to console me as I struggled. But that kindness was almost never paired with a desire to continue searching for the source of my pain. They were willing to put this all on me and my mind and move on, because it was an easier way out.

Right now, the doctors don’t know if removing the cancer will make my symptoms go away. It may, but it may not.

I am confident that no matter what, I will be okay. The support in person and online I have found has been a lifeline. It made me feel more comfortable with the idea of this not only being real, but also being something that cannot be cured.

But I needed to believe it first. As messed up as it is that it took a cancer diagnosis for me to believe that my body was telling me the truth, I’m glad I was able to make it to this place at all. If this is what it takes for me to stop apologizing for every feeling I have, for every inch of space I take up, for every time I make myself heard, then I am grateful for this chance to grow.

I deserve to believe in my own pain, no matter my history. My pain deserves to be treated, no matter my scars. I am worthy of assistance, and I am worthy of trusting myself. We all are.

Pain is our most basic form of communication with ourselves. We spend our lives learning how to talk to our pain, how to care for our pain, and how to express what our pain is saying. To be told over and over again that this fundamental conversation within ourselves is false–that we are not the experts on our pain, despite being the only ones who speak its language–corrodes our sense of self. How can we ever hope to be healed when our society is telling us that we do not hurt in the first place?

Our culture teaches people on the margins from day one that their experiences are not the norm, that their truth is not the Truth. This instilled disbelief has dire consequences, including undiagnosed illnesses, untreated debilitating conditions, and death. It part of is how those in power remain in control of who has the privilege of receiving care.

Resisting the untruths sold to us about our pain is a radical act. Fighting for our pain to be heard is a way of affirming its existence–affirming our existence. Not just with illness and ability, but with any marginalized identity. So much of the work of healing consists of wrestling with believing our reality.

A capitalist, ableist, white supremacist, gender-essentialist society will not give a voice to our pain. It forces us to do it ourselves.