Chronic illness & disabilities & some of the ways they intersect with my trauma:
Content warnings: eating disorders, chronic illness, blood, child loss, assault, medical racism
Although this is a very heavy blog post, please understand that this post isn’t meant to shock or scare any of the people who care about me, but to help others understand what chronically ill & disabled survivors go through & to hopefully start a larger conversation about the ways in which illness & disability intersect with, impact & are impacted by trauma. I’ve had a really difficult time lately with the increasingly blurred lines that have made it all but impossible to tell what is worsened by my trauma vs worsening my trauma, & in the case where it’s both as it often is, which came first.
Please keep in mind that I’m just one person, & please be open to listening to other’s experiences as well. ❤️
I’ve spent the last week surrounded by my closest family members, barely conscious because I kept passing out repeatedly & losing so much blood that my skin took on a bluish tint. I was in so much pain & nothing at all could even so much as take the edge off, but I was too physically weak to even cry. My vitals were being monitored closely & my family & I were trying to prepare ourselves for the worse. This isn’t the first time we’ve been here, but it’s certainly the worse yet. I didn’t think anything could be worse than being on my period- bleeding heavily daily- for just over three years on end from ages 17-20, but now I’m approaching the one year mark of something similar happening again & every other symptom is so much worse now than than the first time around. I pulled through this week, just like every other time before this & I pray I’ll be able to pull through the next time- & that the next time won’t be quite this bad.
Being sick isn’t anything new to me- I’ve had several physical health struggles & pains & nausea ever since I was a baby, & my parents have shared so many stories with me of how helpless they would feel when I would scream for hours & they couldn’t figure out why. I know it was also extremely difficult for them when I spent most of kindergarten in the hospital because of my kidneys not working properly among other things, & being afraid I wouldn’t make it through. Beyond my early years, I would continue to struggle with my health & things got even more complicated when I suffered multiple physical & mental disabilities after being a victim of multiple instances of sexual & physical violence as a pre-teen & teen. It also certainly didn’t help that my go to “coping” mechanism became taking my pain out on myself, in the form of eating disorders.
I used to be pretty open, especially on Instagram, about my struggles with chronic illness, the way my mental health has been affected by trauma, & my disordered eating struggles but I ended up deleting almost all of those posts when my trauma started going viral online again over the last few years. All survivors I know who have their trauma “visible” in any way online have dealt with some degree of stalking & harassment for speaking out, & I’ve experienced a lot of that as well throughout the years but it’s gotten to an all-time worse the last two years.
I started feeling really frightened of being perceived as physically “weak” by people who want to hurt me, even though my strength didn’t save me from being hurt as a child despite me fighting back hard during my assault at age fourteen & injuring my attackers back. I’m slowly starting to learn how to be comfortable sharing some of my vulnerabilities once again, in hopes that others going through similar know they aren’t alone. I’ve been working on setting new digital boundaries, & choosing to share only what I’m comfortable with & at my own pace. Tonight I’m going to be sharing what I’ve been going through lately with my severe health struggles.
I’ve struggled with multiple serious health issues throughout my life, including my childhood & have struggled with eating disorders since my 8th birthday. But when I was in my late teens, my body just gave out in me in many unprecedented ways due to multiple factors like the ways I was abused by others & the ways I abused myself, & also complications from a medical treatment. Things were almost unbearable between ages 17-20, but slowly started to get better & went into remission for years. But over the last few years, between being in (& then leaving) a relationship that had become severely emotionally & psychologically abusive & then dealing with some of my childhood trauma going viral again & all the backlash & abuse that came with that, my body has broken down once again. As of the last year & a half specifically, things are worse than they’ve ever been. It’s excruciatingly paradoxical to feel both angry at my body for “failing” me & angry at myself for “failing” my body. It almost feels like being in an abusive relationship with warring parts of myself. Every single day is a struggle, the severity of that struggle is the only thing that changes & I often don’t know ahead of time what kind of day it’ll turn out to be. I’m trying very hard to take care of myself like I did when I put my illnesses into remission again, but its extremely difficult with very limited money, resources & energy/strength/time.
Besides the constant pain, sickness & other complications I’m struggling with, my eating disorder is also at an all-time worse & so is the way I see myself. It’s not entirely new to me to feel triggered by the sight of my own body, like I shared when I was interviewed by the BBC- I shared on how I used to cover the mirrors in my house because I couldn’t bear to look at myself.
https://twitter.com/rosekalemba/status/1353549296637980672?s=21
https://www.bbc.com/news/stories-51391981
But even so, waking up covered in my own blood & ruining countless sheets & clothes has been particularly hard on me, as well as the accompanying pain. The bleeding & the pain are both visceral reminders of some of the most traumatic things I’ve ever experienced, including being sexually assaulted & beaten & stabbed, as well as losing a child twice. With complex PTSD, it feels pretty much impossible not to be transported back into those moments mentally when all five senses are pulling me back. I’ve both cried myself to sleep & also woken up in tears more times than I can count, & it’s so incredibly lonely. I don’t want anyone to worry & one of my biggest fears is being a burden, so I try to keep it all to myself as much as possible.
I’ve gradually stopped spending time with people outside of my closest inner circle, because I’m terrified to be away from home & to pass out or start hemorrhaging blood uncontrollably. I’m afraid to be away from the few people I trust to help me & to know what to do in an emergency, & my dog who is also a tremendous help & comfort to me in those moments. Because of my trauma, one of my diagnoses is panic disorder with agoraphobia- I’m capable of leaving my house but it brings me extreme anxiety, & it’s only been made so much worse when I’m afraid I’ll be rendered even more vulnerable in public or humiliated in public (both are some of my biggest trauma triggers because of what I went through so publicly as a child) by my body being out of control. It’s also difficult not recognizing my own body some days because of the way my illnesses, particularly endometriosis & PCOS can drastically alter my appearance (such as extreme weight gains & losses, both often happening in very short time periods) & because of the bruising I often sustain when I faint. It feels like a cruel joke that I look pregnant some days because of endo, meanwhile I’ve lost two babies & don’t know if I’ll ever be able to get pregnant again because of the way that illness has ravaged my body. My depression, anxiety & cPTSD have all worsened significantly from the visceral trauma of what I’m going through & also from the chaotic hormones flooding my body because it can’t function properly right now.
Like I mentioned in the opening paragraph for this blog post, I’ve had a hard time even thinking about all of this because it’s very much a which-came-first-the-chicken-or-the-egg type situation, in which my trauma exacerbates my physical illnesses & disabilities, & my physical illnesses & disabilities exacerbate the way I process & cope with my trauma, & often add new layers of trauma in & of themselves.
It’s hard for even me to cope with, & so I try to deal with as much of it as I can on my own but sometimes (lately, often) it gets so bad I can’t help but ask for help. Recently, I was watching a movie late at night & then out of nowhere started feeling extremely dizzy & losing a massive amount of blood, & tried calling for my family but could barely make a sound so I started to crawl up the stairs & ended up passing out on the staircase. When I came to, I started crying & calling out for help again & my dad happened to be in the hallway going to the bathroom & heard me & was able to help me. I felt so sick to my stomach when I saw the fear in his eyes, & we talked later about how seeing me on the stairs in a pool of my own blood had him terrified for a moment that someone had broken in & tried to kill me again. I remember feeling so angry at my own body for “betraying” me like this & for stirring up my childhood trauma for both myself & my loved ones this way. Just a little over a month before that, my amazing best friend stayed with me while I was in the shower crying because I was so scared I was going to pass out in the shower again because those times were some of my worst fainting injuries, & I was afraid to be alone.
I’m very, very lucky to have an incredible father, best friends, & girlfriend as well as a handful of others who have been there for me through all of this. Not everyone has been as understanding & supportive as they have, but the people who aren’t just make me even more appreciative of those who are. Did I mention that some really cool dogs used to visit me in the children’s hospital? I felt so lucky in those moments to have people & animals that cared enough to brighten my day ❤️
I know a lot of people reading this might wonder why I don’t just go get medical help for the issues I’m having. There’s a lot of complex & personal reasons why I haven’t had any luck trying, but among the biggest is that I’ve never actually received any tangible help beyond just being monitored whenever I’ve been hospitalized for severe bleeding or other complications of my chronic illnesses or other serious medical issues. My back was severely injured during my assault at age 14, & the two surgeries I had didn’t help whatsoever. In my late teens & early 20’s, I pushed past my frustration & fears enough to see a laundry list of specialists & finally be diagnosed with the conditions I had been telling my general practitioner I have for years, which was validating & also helpful to have some definitive answers.
But the “solutions” that were proposed to me were bleak & unhelpful, such as being pressured to have a hysterectomy which wouldn’t actually solve the underlying issues at all. For me personally, it would be like cutting off my whole torso instead of removing the thorn in it. I’ve shared the details of my diagnoses before online & have shared some in this blog post, but I’m not going to be sharing my full list of diagnoses here today because there are a couple new ones I’m still struggling deeply to come to terms with because of how devastating they are. I haven’t been able to process a lot of the pain in my life on my own terms because so much of it has been made public, so when I get a rare chance to I like to go at my own pace when deciding how much if anything I talk openly about.
I also feel its important to share that going to the hospital gives me extreme anxiety because during the most traumatic moments of my childhood that I referred to earlier in this blog post, I was treated abusively by hospital staff, something that unfortunately isn’t uncommon for survivors, women or indigenous people & I am all three. The additional layers of trauma those experiences pushed onto me have never left me, & I’ve grown so tired of not only receiving zero help but from having my trust violated & my body & spirit subjected to even more harm by people who took an oath to do no harm. Being treated so horribly when I had been assaulted & then when I lost a baby was traumatic in & of itself. It’s also been extremely disheartening to have been told multiple times as a child that I was obese- not even overweight, but obese- based on BMI (which has been debunked by actual science many times over) during times when I was going days on end with no food & my ribs were showing through my shirt because of my eating disorder & my mom was crying & begging me to eat something. And when I actually did gain a lot of weight from my hormone imbalances & thyroid issues & my disordered eating taking a different direction, I was treated even more horribly & body shamed & had hateful remarks made about my body, while absolutely nothing was being done to treat the actual issues I came in for.
I also can’t afford the proper medical care & specialists I need to see that would actually make a real difference, so I try my best to minimize adding to my enormous medical expenses for things that have never helped me, especially now that I’ve had to take time off to recover with how bad things have gotten lately. Emergency medical care is often unavoidable when I’m losing this much blood because at the very least they have done a good job so far of making sure I don’t die, such as monitoring my blood pressure when it drops scarily low but it takes a lot for me to even be willing to risk subjecting myself to that medical trauma I’ve experienced yet again.
The only relief I’ve ever experienced from my pain & illness has been from taking matters into my own hands, & by doing so I went symptom-free for several years & my disordered eating was also something I was able to experience freedom from during that time. The one bit of medical advice I got that was actually helpful was that I needed to drastically reduce & control my stress levels, because unchecked stress would make my body freak out even worse & would be devastating. I was so grateful to feel so connected to my body & to have made so much progress healing including things I was told were impossible. I’ve written some articles for Millennial Muse about the things that helped me, & am working hard now to find the energy to do those things for myself once again. But in the meantime, I can honestly say I’m proud of myself for just making it through each day. It feels almost foreign to say that after a lifetime of pushing myself to the limit in every way possible, but I’m un-learning so much.
I spent so much of my life suicidal because of the trauma I’ve been through, & how much physical + emotional pain I’m in many of my days, but all I want now is to live. I don’t know how much time I have left or what my future holds, but I’m determined to soak up every bit of happiness & peace that I can. I’ve been going out of my way both seeking out & accepting many opportunities that come my way that help me practice radical self care & healing. I’ve recently enrolled in two classes, & it’s been so empowering & cathartic for me to be reminded of what my mind is capable of despite having a traumatic brain injury & other chronic health issues that make trying to focus & retain information feel like a marathon sometimes.
I’ve been making a concentrated effort to spend less time on social media, to help manage my stress levels which is one of the most important & impactful ways I can take care of myself right now & give myself a fighting chance at beating this. I’ve been trying to find the balance between being able to spend time online with the biggest support community I’ve ever had, & also unplugging & taking the time to appreciate the things all around me while I can. I like to think that everyday I’m coming a little closer to finding balance & reconnecting with myself, & that the next year will be a time of radical healing for me which I can then use to help others heal. If you’re reading this, please think a positive thought or say a prayer for me if that’s something you do❤️ I want to be able to heal so I can show up better than ever for my family, my girlfriend, my friends, my rescue pets & my community- & myself, because I’m realizing more than ever that I deserve the same love I give others. Whoever might be reading this, I hope you can learn to love yourself the same way too.