Connection is the bond that makes the difference when people are suffering, and often by sharing our own struggles we flash another light on the path of unity, togetherness, and empathy. I have been so inspired to see brave people-some who I know very well, and some who I haven’t spoken to in years-share their own experiences with mental health, illness, or abuse out of the desire to support and be supported.
Similarly, in my small way, I hope to share my experience so that one of you feels less alone, or may better understand these struggles and spread awareness and empathy. Although I’m a small scale sharer, I believe these kinds of truths can be powerful on many levels.
I’ve been very vocal about my struggles with endometriosis and related pain which has been present since age 9. This was misdiagnosed/undiagnosed for years before I received proper care. Though I didn’t realize it at the time, this disease was an ever present curse that haunted me throughout my life. It followed, one step behind, through middle school, high school, college, and grad school. Though I often brought it up to doctors neither they nor I understood what was wrong with me and it was often mischaracterized. I was told to lose weight. I was told it was normal to be in excruciating period pain. I was told women had low pain tolerances. I was told to get over it. I was told other women get on with it, and I should too. I had friends remark that the most common phrase from me was, ‘my belly hurts.’
Chronic pain is its own unique struggle because it is constant and progressive, it is internal and unseen. This naturally lends itself to people not understanding or disbelieving it. To be perfectly honest, until I collapsed and required emergency surgery, even I came to believe I was weak, that I had a low pain tolerance, and that I was unable to ‘get on with’ something that every woman felt. I have learned the hard way that I must be my own constant advocate. I’ve become accustom to talking about pelvic pain and things that most people find embarrassing. However, one of the many reasons I believe it is important to be vocal about these uncomfortable topics is because if nobody utters that first embarrassing word, every person living with the same pain will suffer silently and alone.
Something I’ve not been vocal about is my struggle with Post Traumatic Stress Disorder. I was assaulted at 18, during my first semester at college, and, though difficult, was able to overcome the massive anxiety and strain it put on my life at such a young age. However, these anxieties began to resurface on a small scale after being diagnosed with endometriosis. I would suffer from occasional panic attacks because I felt that I could no longer trust my own body. This truth that I knew, there was something wrong, my pain was real and it was not normal, had been ignored for so long and by so many that it was difficult to understand.
I was also told I had stage 4 endometriosis, and it would likely be difficult for me to conceive even after the marathon like surgery I had due to a hemorrhagic endometrioma. Nevertheless, my husband and I did everything we could, sought out the best doctors available, followed their instructions to the T, tried many different (and expensive) hormonal medications to manage the regrowth, and finally underwent another surgery which led to our beautiful baby girl.
Of course, an easy pregnancy was not in the cards. Early on I developed a hematoma, which itself isn’t uncommon, but there was so much blood that I visited the ER twice with the fear that I was losing the baby we never thought we would have. My morning sickness was prolonged and severe. I threw up several times a day and struggled to eat substantive food.
Unfortunately, I went into my pregnancy at a weight that was not ideal. I had been in so much pain previously that I was virtually inactive which led to weight gain. Most people know this increases your risk to develop dangerous complications in pregnancy, which I did. I developed insulin controlled gestational diabetes. I was constantly in and out of the hospital and it was a struggle physically and emotionally. My blood pressure was dangerously high, I was kept for observations more times than I can count. I was admitted for several days toward the end. My anxieties, naturally, continued to build.
I was never asked for a trauma history.
I was never spoken with about mental health outside of postpartum depression.
Because of my history with endometriosis, a great deal of this anxiety was centralized around doctors, hospitals, and surgeries. I attempted to explain to the anesthesiologists, on the day of my surgery that I have significant anxiety surrounding surgery and the idea of a c-section was scaring the ever living shit out of me. Also that I had experienced PTSD in the past as a result of an assault. Though I was calm, clear, and direct, I was not taken seriously.
When I started to have a full blown panic attack upon entering the operating room, everyone was shocked. I was shaking so furiously, it looked as if they had locked me outside in the middle of a blizzard. The kind and maternal nurse who was only a year older than me rubbed my back like my father had when I was a baby. She let me cry, she held my hand. After the epidural was inserted and my husband came in the room, upon seeing the terror on my face he kept asking her, ‘oh my god is she okay?’
I now know that women who have experienced a sexual assault and who have dealt with PTSD previously are at a much greater risk for experiencing birth trauma, as are women who experience more medical intervention. But at the time all I knew was something horrible was happening to me again and there was nothing I could do to stop it. I couldn’t have a natural birth, I was having a birth that felt a lot like something terrifyingly familiar. And when they began pulling I began sobbing.
My husband was terrified. They pulled the baby out but she wasn’t crying (she had low blood sugar because I was a gestational diabetic). She was perfectly fine, but nobody told me that, they rushed her away without holding her up. I knew something was wrong but I didn’t know if it was with my baby or myself. They rushed my husband away, I still hadn’t herd her cry. They were talking about the aspirin I took every morning to control my blood pressure, they were talking about bleeding. They had been talking about summer vacations and weekend plans a few minutes ago but the tone had shifted. I thought, ‘Do they know I can hear them?’
I looked from left to right feverishly. ‘Is she ok?’ I asked. ‘Where is she? Is she ok?’ Nobody answered me, they were busy and I was alone.
And the feeling felt familiar. I was trapped. I couldn’t move my body. I was afraid. Nobody seemed to care. I felt in that moment physically and viscerally how I felt laying there, discarded, after my assault.
A tube to my left was filling with blood and emptying and filling again. I heard the baby cry. ‘She’s fine,’ I thought. I was relieved but a new fear washed over me. ‘Am I ok? Will I be able to see her?’ Nobody answered me. I was in full blown panic, and frantically looking for any reassurance. I prayed that if I was going to die I could see my beautiful girl first and that my husband was there when I did.
This vivid and effervescent moment felt as if it lasted hours. Of course, it was realistically only a matter of minutes.
The memory, though, is tangible. It is lifelike and real. It feels, at times, when I close my eyes, that I can feel the pulling, I can feel the cold sterility of metal on my back, I can hear the doctors’ frantic chatter ringing around me, I can see the blood, the blue of the screen is electric and dances around my face like a fog, the distant cry of the baby makes me well up, my arms hurt from their rigid positioning and nobody is there. The memory hangs there in my mind, when the baby cries, in my sleep, when I go to the doctors, it replays like a broken record. This is what it is like to relive a trauma.
The memory changes once my husband came over holding our daughter. It shifts to a daze, it flows more evenly like memories usually do from vivid points to blurry points. That is, of course, because I’m not reliving a trauma.
Many women who experience birth trauma are misdiagnosed with postpartum depression. I recognized the signs of PTSD several months after the birth. I sought therapy from a therapist specializing in birth related mental health. She has explained why these experiences are physiologically and psychologically linked.
I am sharing this because I honestly had no idea this was a thing before it happened to me. If I had seen a post or article about it earlier it would have really allowed me to understand and communicate my needs to my healthcare providers and OBs. It may have prevented it from happening or lessened the impact by having more appropriate support.
Of course, it shouldn’t be up to us to know everything. We place our trust in medical professionals and they should specifically ask about trauma history like they ask about many specific physical medical conditions.
I haven’t always experienced kindness when being open about these experiences. There are many people who don’t understand trauma and female reproductive diseases. Often this ignorance can result in damaging messages to those who are suffering. Trauma and PTSD is not something reserved for people who have been in war. It can be experienced by anyone who has experienced trauma.
Moreover, I want to explicitly say that these things happened to me despite the fact that I have many advantages and privileges. I am white, had access to healthcare, access to world class hospitals, economic stability, education, and support. Women of color and in marginalized communities are exposed to trauma at greater rates, mistreated, or ignored during pregnancy at greater rates, and are more likely to lose their lives during pregnancy at greater rates. They are also taken less seriously in medical situations across the board which includes female reproductive health and dealing with female reproductive diseases. They deal with prejudice when trying to access basic medical care.
We have to remember that if this is happening even to women who are privileged than it is happening with more severity and with more frequency to people who are marginalized. Nobody should suffer this way.
I want to state that for myself and anyone else suffering with these realities, your pain is valid, real, and you are not alone. Moreover for anyone suffering at all, you are not alone. There are people who believe you and will raise you up, who will show you the empathy and understanding you deserve as a fellow human.
What would have made your birth experience better? My birth experience could have been improved through a trauma assessment during my prenatal care. I should not have been dismissed when expressing my concerns regarding anxiety during the c-section. I should have had someone with me at all times for support during the c-section. I should have been given a more thorough postpartum mental health assessment that included screening for other conditions aside from depression.