Sarah Austin, the mother of Trinity Lillian Graves, tells her daughter's heartbreaking story. Trinity suffered debilitating pain from endometriosis and adenomyosis for nearly four years before she took her own life. Because Trinity's endometriosis pain was never taken seriously by doctors, her suffering was viewed solely as a mental health issue. There was "no regard," Sarah writes below, "for the original complaint: pain." Today, Sarah tells her daughter's story in order to urge health professionals, patients, caretakers, and the public to prioritize the devastating effects of this disease. "Telling her story is both a catalyst and commitment to ensure her precious young life holds far reaching purpose and impact for others." Thank you, Sarah, for sharing your daughters story with so much courage and commitment to endometriosis advocacy. You can donate to the fundraiser we're hosting in Trinity's honor here. To watch an interview with Sarah Austin on EndoTV, where she discusses Trinity's story in greater depth with EndoTV host Diana Falzone, please visit this link.
Trigger warning: The following piece contains discussions of content relating to suicide and self-harm. If you or someone you know is in need of crisis services, please call The Lifeline which provides 24/7, free and confidential support for people in distress: 1-800-273-8255.
My daughter Trinity Lillian Graves, 18, took her life leaving these words:
I please ask you to understand the pain and anguish I live with every day is unbearable. My physical pain is beyond unbearable and I’m tired so so so so tired of living in a body that isn’t my body.
Trinity had adenomyosis and laparoscopically-confirmed endometriosis. She suffered debilitating pain for nearly four years. Endometriosis is a chronic disease where cells which are similar to the lining of the uterus grow outside the uterus, causing pain and potentially serious symptoms that interfere with a person’s quality of life. The disease is enigmatic and difficult to diagnose because while it is typically found in the pelvis or abdomen, it can grow in other locations as well. One in ten women are affected globally. The exact cause isn’t known, and there is neither a cure nor satisfactory therapy for all patients.
It’s tough to treat pain that is unseen. One of the greatest hardships among endo sufferers is getting people to believe their pain. Instead, the people around endo patients frequently dismiss their pain by invalidating it and assuming they are instead struggling with mental illness. Few things sap the human spirit like lack of hope! I believe the delay in diagnosis and dismissal of prolonged pain begets psychological distress. The BBC surveyed 13,500 women in the largest endo study of its kind and roughly half of the participants attested that the condition led to suicidal thoughts.
Trinity’s story is not simple. She was a whole person with a whole story to tell. My first born, she was more than a daughter to me. She was my #2. It’s exceptionally difficult revisiting my intimate journey with her. I miss her incredibly. I can’t go hours without thinking of her. My heart is tethered to her in heaven. How I handle the worst circumstances of my life is witness to the world. Telling her story is both a catalyst and commitment to ensure her precious young life holds far reaching purpose and impact for others.
All the videos we have of Trinity are her teasing her sisters, cousins, and friends and joking around! I mostly remember how fun she was with her playful humor. We could communicate without words. She had the gentlest spirit and most engaging presence. My orchid child—she had a tender and sensitive heart. Trinity had a poetic mind and a way with words. She created many beautiful writings, poems, and musical rhymes. Trinity was extremely intelligent, sharp-witted, and determined. She’d research any topic that was of interest to her until she was a master: Hair, photography, sewing, crochet, they all mattered to her. Her art was so effortless, and she was constantly seeking to improve her skill and innovate. Fashion was her favorite! Her sisters and I ran all our clothes/shoes/bag buying decisions past her first. She was beloved by her friends, classmates, and teachers, and stood out as a leader. She was powerful! She loved debate. I used to call her Little Miss Current Events; my Reader’s Digest. She wanted to be Secretary of State and I believed her! She used her boldness in advocacy to speak out against the hyper-sexualization of black girls, for period poverty, people of color, and the LGBTQ community.
We thought they were just painful periods. At Trinity’s freshman physical, we told the doctor she had been missing days of school every month during her cycles. The doctor guessed she may have PCOS and our journey began. “Healthcare” is a battleground. Post-divorce, we had state insurance. That meant we were vulnerable with very limited resources. Without the ability to seek the best practitioners, we were left to find anyone who would accept her as a patient. We had the distinct pleasure of working with 12 unqualified, ill-equipped medical professionals: Gynecologists, adolescent health physicians, GI physicians, mental and behavioral health clinicians who collectively were insensitive, minimizing, and dismissive. As a group, they were not particularly well trained, they didn’t understand the symptom profile, they were not used to complex cases, they did not present options, and they inspired no hope.
In January 2018, Trinity’s pain became daily. In August 2018, Trinity attempted suicide by overdose. It was a cry for help. It also made our efforts that much more difficult. She became viewed entirely as a mental health case without regard for the original complaint: pain. No one had any idea what we were dealing with.
Trinity missed so much school, she had to repeat the 9th grade. The first day of school, she was in so much pain (again, again!), I had to take her home early. She often couldn’t stand or be on her feet for long periods. Mornings were the worst; upon waking, the slightest movement she made ignited the pain, making getting ready difficult or impossible. She would burn her left forearm to get momentary relief from the terrible lower abdominal pain. Her sleep habits depended on when she couldn’t fight the pain anymore and finally pass out. How profoundly her condition affected her emotions! She felt like a burden. I can’t even describe the distress! The school suggested she sit out her first semester to try to get a handle on her pain.
When I told Trinity’s story to an office building co-tenant while in tears, I was introduced to Eastern medicine. The best practitioner to date turned out to be the acupuncturist for the Chicago White Sox. He was kind, he was good, and he listened. He explained how female hormones and cycles work. Estrogen is a happy hormone. When you cycle, estrogen drops while progesterone increases, changing brain chemistry, and leading to depression. It was an aha moment! Trinity had been cycling twice a month which made it the case that hormones were contributing to her depression, too. Acupuncture returned her to a more functioning person, successfully dialing down her pain to a manageable level. It was so very expensive, I could never afford the full treatment regimen.
Life resumed with the help of acupuncture, Chinese herbs, and daily cannabis. There were still bad days, but she was doing it. When Trinity experienced a dip in pain, she’d emerge! Bubbly, funny, teasing (her sisters), cooking, creating, inventing, sewing, crocheting, working on photography, making candles, soap, and jewelry, and cleaning, organizing, and engaging with friends. Trinity attended private school in Chicago, interned at a downtown law firm, attended the Northwestern-Medill teen journalism program, and worked at Pot Belly. Her pain hovered around six (scale: 1-10) which she could manage. At eight, she was in bed in a ball. Never lower than four. Trinity was private and didn’t share her struggles openly. She looked functioning and well. She carried herself with such grace. It seemed like she floated as she walked. It was painful for her, she measured every step, and no movements were fast.
Endometriosis? My friend Melissa Boudreau shared her endometriosis battle on social media with a photograph of her in bed in a ball. It was exactly how I saw Trinity so often. Melissa’s story became our guide; it was a clue that gave us a new direction. Through Melissa, we had access to a list of doctors experienced with the disease. Sadly, it’s a very small number nationally. Now with private insurance, we chose Northwestern Medicine Center for Complex Gynecology. Trinity was not thrilled to meet a new doctor. She needed more help, but for good reason, she had lost trust in doctors and was not a willful participant. Subsequently, her doctors confirmed adenomyosis and implanted an IUD. But instead of cessation of menses, Trinity was bleeding more than ever. The additional treatment options were pelvic floor therapy, or medication to put her body into menopause. At 17, the answer was no. Trinity quit.
Then Covid lockdown. Trinity was accustomed to being uncomfortable and never relieved enough from pain to relax. Now what had brought some joy—the distractions of school, work, church, and activities—disappeared. Acupuncture, the sole lifeline, was gone. She sat in her pain. Despair continually gripped her. On March 17th, 2020 Trinity wrote a blog post for a school presentation titled, “Endo Emotions: What it Does to Your Mental Health." We found a therapist she liked (virtual) and a psychiatrist to prescribe meds for anxiety and depression. That calmed her night terrors, but pain remained the significant hurdle. A girlfriend introduced her to a TENS unit, which helped.
School in session fall 2020. Excitement. Trinity was on medication and felt focused. She texted: “This is why I need medication because now I’m more determined that all I need is to get my pain under control.” She registered to vote! She was back to work! She launched her online crochet business! She was gathering college admissions info! She texted: “I can’t wait! This is all building for college.” Thank goodness school was still virtual, as mornings were a struggle again.
On September 25th, 2020, Trinity texted: “I feel trapped in my own body. I hate my body so much. I’m not talking about weight; I’m talking about pain. I couldn’t sleep again last night and I was up until 5am because of pain, then I overslept. I can’t even attend work or school like I want to. Like I’m trapped in this vessel and I’m a soul that’s capable of so much more, but I can’t … I feel suicidal even when I’ve been taking my medicine.”
On October 14th, 2020, a meltdown: Trinity was off that day and refused her therapy session. I spoke with her therapist separately then returned to Trinity’s bedroom to find her sitting in the center of her bed, large pink Squishmallow in her lap, arms up, holding a rusty X-Acto blade in her right hand, tear drenched cheeks, face up toward the ceiling. I saw her pleading from the depths of her soul. It felt like I stepped into another dimension, time froze, and I didn’t draw a breath. I gently, slowly, took the blade from her hand, sat in front of her, and embraced her. She screamed, a scream I had never heard from my child before. I was terrified. Shortly we were in the ER, in a safe room, yet again.
Trinity’s meltdown revealed additional drug use. I thought it was because (she confessed) she had flushed her meds and stopped taking them (she was hearing voices). The psychiatrist knew better. Her dosages were too low to create a drop-off. I was shocked to hear Trinity divulge and recite the drugs she’d been taking. I spoke to Trinity every day, saw her every day except for when I travelled. She spent a lot of time in her room. Resourceful and connected as Trinity was, I don’t know how long she was doing street drugs, too. In truth, they provided mental escape, and never helped the pain.
On January 4th, 2021, laparoscopic surgery confirmed a diagnosis of endometriosis. Trinity was so relieved. She smiled a big radiant smile when she learned the pain wasn’t all in her head. She had asked her therapist whether she could be making it all up. We had high hopes, but the procedure did not cure or relieve the pain. It increased. She left the post op meeting in tears. After a very long journey and now 15 medical professionals, the next steps were to take a pill to cease ovulation (menopause), then in three months, try another form of birth control. It’s just so obvious there are no answers. Even among the nation’s best.
On March 18th, 2021, Trinity texted: “I’m in so much pain I want to die.” That statement didn’t register then like it registers now. We had a plan. We were following it. What else could I do? No doctor would prescribe pain meds without surgery or an obvious wound. Especially when OxyContin/Purdue is all over the headlines. Trinity was also judged because she was a young lady with a prior OD and history of substance abuse. Pain was her life. She told me, “I never thought I’d make it to 18.” There was no amount of cannabis sufficient. Tylenol and Aleve gave her bad indigestion and acid reflux. The pain made her nauseous and she vomited every day. She hated that. She couldn’t eat and would mostly drink juices as that was all she could tolerate. Mornings were out. School was out. She had to take a leave from work as she couldn’t be on her feet long enough to complete her shifts. The sedentary lifestyle caused her to gain more than 50lbs in a year. She would get so stressed she’d hiccup multiple times a day. School wanted to hold her back yet another year due to the volume of missed days and missing assignments. Once so organized, she now lived in clutter. She stopped tending to basic personal hygiene. She kept her hurt and emotions to herself, struggled to speak up, and she’d shut down. She believed she had little future to look forward to and did not want to talk about it. She stopped psychiatry. Stopped her meds. She was in-and-out of therapy. She was losing faith.
My attempt here is to tell the story with as much weight and brevity I can. There is, of course, more. Trinity kept company with people who supported and encouraged her choices, and it became a problem between us. She chose to move out with her boyfriend, and afterwards when I became apprised of their activities, I felt hurt, disappointed, and angry. I did not know how to remedy the problems; I kept in prayer and trusted the matter would resolve with time. She was 18. She was smart. She was a good girl. She would figure it out. Trinity ended up going to live with her dad. I believed that was good. I kept tabs on her through her therapist and her sisters who would visit. I believed she was safe and there was time. In total, she was apart from me for only three and a half months. The grief is unbearable.
“Trinity well, safe, free.” That was my daily prayer. God answers prayer, I just had no idea what I was praying for. God reminded me of Trinity’s constant prayer to be free from pain, free from her body. He brought her home. Her life was not taken, it was given. Trinity was a most precious gift I loved, grew with, enjoyed, and laughed with for over 18 years! Her suffering and sacrifice are for all the women who need a voice; Trinity is advocating in death, just as she was in life. God chose Trinity and me. We are the right mother/daughter pair for this assignment. God continues to hear cries and prayers of those suffering with endometriosis. He is in the business of redemption. It’s incredible how one story can breathe momentum to life. Significant losses disrupt the sense of balance, stir conscience, and inspire participation and support. The plan is always bigger; God is in control. As Rick Warren said, “Your greatest ministry will come out of your deepest pain.”
This is serious. Endometriosis destroys lives. Ladies, if you can, please have the courage to tell the graphic version of your story. Tell it, write it, share it, photograph it, and post it. You don’t have to be afraid. Communication is often difficult; be resilient and have courage! Speak up and don’t settle for feeling unheard, intimidated, or dismissed. Don’t leave the doctor’s office with unanswered questions. Understand that every practitioner looks through the lens in which they’re trained and few have a holistic perspective on health. Endometriosis needs a multidisciplinary approach: access to GYNs, physical therapy, psychology, psychiatry, and nutrition (anti-inflammatory diet). Healthcare providers need to be sensitive to, and validate the disease-related grief of what patients are experiencing. There are many doctors who care and are working hard to find solutions, treatments, and a cure for endometriosis. We need to have patience and advocate funding for research. We need to work with doctors to improve methods of communicating pain and ways of identifying women at higher risk for mental health conditions. As a community, we need to share resources that help, treatments that have worked, along with our favorite practitioners. “If you want to go far, go together,” as an African proverb says.
I am so honored to have The Endometriosis Foundation of America dedicate a fund in honor of Trinity's memory. As a single mom, my greatest difficulty in caring for Trinity's medical needs was funding her ongoing alternative pain management. It's my wish that Trinity's fund will be used to assist patients in need with monies put toward alternative pain management options such as acupuncture, Chinese herbs, physical therapy, cannabis, TENS units, heating pads, etc. I hope to build sufficient resources to fund excision surgeries, too.
In Trinity's memory and with all my love,
Sarah
“He comforts us in all our troubles so we can comfort others.” 2 Cor 1:3-4
Sarah Austin is the National Director for Hilco Real Estate Advisory and has nearly a decade of experience working in commercial real estate. Sarah serves on the Chicago Board of IWIRC, International Women’s Insolvency & Restructuring Confederation. Sarah is an affable ambivert, quick to smile, easily finds something to like in any person, and is always on the lookout for a silver lining. Her peak life experiences include her three daughters, co-founding three businesses, growing up in ballet and theater, and winning first place in state and international speaking events. In her free time, Sarah enjoys reading books, spending time with her daughters and extended family and friends.
