Pain

She could not remember living a day without experiencing some form of pain. Not to say that the pain was always unbearable; as a matter of fact, it rarely was. Bearing the pain had become part of it all. Sorrowfully, she came to accept pain as normal. She always believed that she was born to endure her condition, that she would endure it all of her life, sensing somehow that the pain could not be eluded, that it was part of her, immovable and unyielding.

She could not remember living a day without experiencing some form of pain. Not to say that the pain was always unbearable; as a matter of fact, it rarely was. Bearing the pain had become part of it all. Sorrowfully, she came to accept pain as normal. She always believed that she was born to endure her condition, that she would endure it all of her life, sensing somehow that the pain could not be eluded, that it was part of her, immovable and unyielding.

As a child, she would wake up tired, with dark rings under her eyes, letting her mother dress her as if she were a doll, hoping that nap time would come quickly. Her mother knew she was in pain, but there was only so much she could do. The doctors had told her she had a lazy bowel — a form of chronic constipation caused by slow movement in the colon — and there was no reason for concern. In primary school, she cried when she was told that she could not be exempt from the week-long trip to a ski resort. She did not want to go. She was scared her body would fail her when it would be embarrassing and not just painful. She went on the ski trip and got sick on the first day. She sat next to the ski patrol cabin while all the other children went skiing. She waited for the sun to go down. That’s when the bus would come to take the children back to the hostel. The next day, she could not keep her breakfast in, but the accompanying adults did not want to miss a day skiing, so she had to go again. Her parents were called, but the teacher assured them it was not necessary for them to come get her. It was perhaps the longest week of her life. At the end of the school trip, at the rear of the bus, she heard her teacher say that she had been faking being sick because she did not want to go, that it was all in her head and that she had to learn to do the things her peers were doing without making a fuss. This reasoning she would learn to understand. It was not just that they did not believe her. She understood her pain was an inconvenience to others and that she was expected to silence it, to make it small, to handle it in secrecy, and to show up in the world as if she were unaffected.

In middle school, she would take painkillers every morning before getting on the bus. When the pain was too sharp, she had to call her mother to take her home. Throughout middle and high school, she missed countless days of school because she could not bear to be in pain away from the comfort of her home. She had to take a break from her education during college. She could not do the things most people her age were easily and painlessly doing. Her mind was requisitioned to care for her broken body.

She was twelve the first time she asked for help. After a quick examination, she was told that she had Irritable Bowel Syndrome, a common digestive disorder with no known cure. They explained that there was nothing to be done, and that the brain was primarily responsible for misunderstanding the signals sent by the gut. She could exercise more. She interrupted that when she did, she experienced flare-ups. They replied that she had to exercise more anyway. She could drink more water and eat better. She tried responding that she already tried that, and it wasn’t enough. They said that it must be anxiety or stress, then, and had she tried seeing a therapist? They advised booking a therapy session and consider trying antidepressants to see if it could help reduce the pain. The specialized psychiatrist she was referred to said he did not take any new patients and it was left at that. She accepted that being young and a girl led to disbelief and limited patience from the medical profession.

She was ready to try anything to alleviate the pain: naturopathy, acupuncture, osteopathy, dieting, fasting, eating dinner only, taking supplements, yoga, meditation, therapy, MRIs, sonograms, blood test after blood test. On paper, she was doing well. She did not look ill. Her pain was invisible, impalpable, silent. And so the cramps, the bloating, the back pain, the acid reflux she was diagnosed with four years after she had spoken about it, the random fainting, the constant brain fog, the chronic fatigue, the ever-lasting headaches, the nightly bruxism, the acne, the eczema, the resistant yeast infection doctors gave up on, the bladder pain syndrome, the painful period, all of it was deemed normal. All spoke to her, and to her only, in murmurs she could not ignore. If she could forgive her body for failing to thrive, understanding that it was struggling to survive, she could not disregard the many expressions of pain she hosted. Enduring was harder and harder. The pain had transmuted into perpetual grief.

She never gave up — never entirely. Whenever a new symptom stitched itself onto the rest, she sought medical advice again, hoping that perhaps, this time, someone would be able to help. That this time, it would be different. That she would have something. That there would be a name, a diagnosis attached to what she was going through. That there would be proof that she was not lying, that it was neither impossible nor normal for a young woman to be in constant pain. But the test results invariably came back negative. As always, her symptoms did not translate into existence. She was told that if she was lucky, it would pass on its own. Then she was sent home. Sometimes, she felt a renewed need to advocate for herself and would decide to book a new appointment. Until, eventually, she was tired of facing the doctor’s indifference and surrendered. It had become a cycle — trying, then retreating. It is a strange feeling, abandoning oneself. It does not pacify the grief. It makes it even more indigestible.

One evening, she did some research online and browsed a few forums, not expecting to find much. She had been looking for possible answers and solutions she hadn’t yet tried. What she found was a local activist group of people like her — people who live with chronic pain and refuse to stay silent about it. At the end of one post, there was a link accompanied by an invitation to those who feel the need to connect with people with similar experiences. She clicked on it: “Chronic Pain Support Circle – Weekly Meetup (In Person & Online).” She hesitated, bookmarked the page, and closed her laptop. The next week, she opened the page again. She wanted to join: the thought had lingered softly in her mind. It can’t make the pain go away, but can people carry their pain together? Does it make it lighter?

When she arrived at the meeting location, she didn’t know what to say or where to start. She had never shared her struggles out loud in front of a group. She was nervous and wanted to be somewhat prepared, so she quickly scribbled ideas on a piece of paper. She figured talking about how her conditions affect her appearance would be the least difficult. After a few meetings, maybe she’d feel comfortable sharing the rest — the emotional weight and the pain itself. The newly arrived members introduced themselves and everyone shared greetings. Some were very open about their journeys, others were more reserved, and one remained silent — not quite ready to talk yet but happy to listen and just be here. When it was her turn, she set her mind on talking about how unsettling it feels to witness one’s body break down prematurely: how the thinning strands of hair feel in her hands, how the eczema has stripped the lines from her palms as if erasing her fate, how she cannot bear to wear tight-fitting clothes, and how the rashes from hot water bottles won’t disappear from her stomach and thighs. She told the group how she avoids mirrors because she hates what she sees. She also confessed the guilt she feels for caring about her appearance when her priority should be her health. A few members whispered words of encouragement, while others simply sat quietly. She had always known she wasn’t alone but had never felt it as she did in that moment, surrounded by people who knew and understood.

At the end of the fourth meetup she attended, a young woman approached her. She said she’d like to talk more because it seemed they could get along well. She wrote her number on a piece of paper and gave it to her. She promised the woman she would text soon. The new members, her included, had begun to open up more. There was more chatter at the beginning and end of the sessions. People were getting comfortable. It was a safe place where they didn’t have to pretend they were okay. At the beginning of the sixth meetup, one of the organizers shared that they were going to start organizing activities and welcomed ideas from potential participants. Of course, everyone’s needs would be taken into account and accommodated accordingly. He also mentioned they were looking for someone who could spare a few hours for a project: contacting medical professionals to inform them about the community association. The goal was to find professionals willing to work with the association to offer consultations — possibly at a reduced price for the less fortunate — and to create a multidisciplinary team people in need could be referred to. They had already secured the help of a therapist specializing in the care of chronic pain patients. The meeting then proceeded as usual. She spoke about her current symptoms and how harsh they had been lately. She said she wouldn’t let it ruin the summer vacation she had planned and apologized because she would miss a meetup. Of course, it wasn’t necessary; people came and went all the time. Those who took breaks or stopped attending were always welcomed back. At the end of the meetup, she approached the man who had spoken earlier. She told him she’d be happy to help with the project. His face lit up as he excitedly explained more. He told her that the association was quickly growing, which was amazing given it had only been active for a few months. He hoped they could help even more people, as more participants were joining weekly meetups, especially online. He said they were already considering adding another weekly session to meet demand. He asked if she was free to start working on the project next week. She nodded, smiled, and they waved goodbye. She had to leave because she was meeting her new friend — the young woman from the fourth meetup. She was excited to share the news about the activities and the project. She felt a soft heart lift, knowing she could do her part and give back to the community by lending her voice to represent people like her. The pain was still there, but it was quieter. She felt proud for taking that step to join the support circle meetup. Was she just trying another cure that wouldn’t work? Maybe, but she wasn’t giving up.

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