by Ashley | Mental Health
First came the cramping, but it was “just” normal uterine pain that came with every little girl’s period.
Then came the fatigue, but everyone around me seemed to frequently discuss how exhausted they were, so I was tired too. Then came the bathroom urgency; I had to go, and I had to go NOW, but the thought of sharing this information mortified me into silence.
Then came the red flag, noting I was underweight; in poured the compliments… oh how lucky I was to eat whatever I wanted and still look skeletal in double zero jeans. Then came the stabbing pain; it had to be emotional and stress related though, right? I was a teenage girl who set impossible academic, athletic, social and beauty standards for herself; I traded sleep for straight A’s, stayed late after practices and exhausted myself in trying to be liked by everyone.
Then came the eating disorder pamphlets from my general physician; my sought after physique was finally concerning enough to discuss, but she refused to believe that I ate, no matter the contradicting arguments made by myself and by my mother.
Then, at 15 years old, came the traumatic suffering my brain worked so hard to disassociate from. While the weeks surrounding my Crohn’s diagnosis remain fuzzy, there is one night, quite possibly the worst of my life, I remember too vividly. This was the night I finally realized my doctors had been wrong; I chose to listen to them, instead of my body, like we good little girls were trained to. You know when doctors or nurses ask you to rate your pain on a scale of 1 to 10? This was my 10…11, 12, 13… My family helplessly watched me sob and scream on the bathroom floor. I had knives being plunged into my gut before being viciously twisted around. I was on fire. I could hardly breathe. I crawled. I crumpled. I tried to force myself to vomit. I begged for it to end; I begged to die. How the hell did I end up on death’s doorstep when my biggest concern prior to this event was making my high school’s varsity soccer team?
It took me a long time to process my diagnosis; I had never heard of Crohn’s, or any type of autoimmune disease, until the days leading up to my first colonoscopy, my day of diagnosis (September 13, 2013). My intestines were plagued with hundreds of ulcers and so inflamed that my pediatric Gastroenterologist could barely move the scope throughout. He was stunned; this was the most aggressive case of Crohn’s he had ever seen. 
While my insides were waging WWIII, I was playing varsity soccer, taking AP courses, participating in clubsand socializing; he couldn’t fathom the idea that I was even capable of getting out of bed in the morning. Little did I know, I was entering the first stage of grief when it comes to life with chronic illness: denial. A lot has happened in the near 7 years since my Crohn’s diagnosis: two bowel resection surgeries, one gall-bladder removal, new diagnoses, comorbidities, labs, scopes, scans, hospitalizations, dozens of ER visits, specialist appointments, Humira injections, Remicade infusions, Methotrexate (pills then/injections now), Prednisone, countless medications, therapy, 504 plans, class accommodations, and so on. In total, I missed more than half of my school days in high school. 
On the contrary, in this time, there was also a ton of good and sense of normalcy in my life. I worked summer jobs, traveled within and outside of the country, played three years of varsity soccer; I won a district championship, went to state twice and was named captain my senior year. I graduated high school, spent countless hours with my closest friends, partied, started my first year of college and partied a lot more. I did stupid freshman things, held my friends’ hair back after long nights… the whole “college experience”. 
As you might imagine, this lifestyle was not sustainable for me; it became a lot harder to stay in denial. To be fully honest with you, it took a night of drinking until I blacked out, followed by one of the worst hangovers of my life to realize it was time to go home; home to my mom, home to myself. One semester away at college, pretending I wasn’t chronically ill, attempting to keep up with my peers brought me out of denial.
It took me to the next phase of my grieving process: bargaining. I spent many years in this phase trying to bargain with a con artist who had no intentions of following through with her side of the deal. My life was consumed by this crook who left me in the dark, in the dust, crippled with anxiety, shaking, afraid and traumatized; however, she taught me one of my most valued life lessons: you can not bargain with chronic illness. Do not try. You will not win.
We have not found a way to outsmart her yet. In the meantime, find ways to cope, to adapt, to nurture; you unfortunately have to meet chronic illness where she stands. So, be brave and show up for yourself; take a seat and compassionately ask her, “What can I do to help you?”. Listen to her needs, and do your best to offer her your support because, honestly, your life depends on it; that’s the brutal, unfiltered truth. We are at the mercy of this selfish bitch right now, but I promise you, we’re working on that; this leads me to the next phase of my grieving process: anger.
First off, I’ll say there is a lot of anger that comes with chronic illness, a lot of it. This is expected, inevitable, common and valid. Be angry. You’ve earned it. However, you have a responsibility to handle and manage this anger in a healthy way; your strategy cannot include bottling it up. I survived an overwhelming number of emotional outbreaks, and so did those around me. I was angry at life, at the universe, at myself, at my body, at my intestines, at my genetics, at my stolen life. I was angry with my doctors for giving me hope and then for later crushing it with their own bare hands. I was angry at the medications that didn’t work. I was angry with my coach for yelling at me for being sick; who called me out for being tired and in pain, for not keeping up, even though we discussed my new medical issues in confidence, where she faked compassion like an Oscar winning actress. I was angry when I needed surgery soon after my diagnosis. I was angrier about my second surgery, during second semester of my senior year, before prom and graduation. 
I was angry with my doctors for telling me “we don’t know” and then not providing further resources to help. I was angry I had to hit pause on my education, when my fourth year at Boise State University rolled around. I was angry that my school wasn’t protecting me like they ensured they would with the help of my personalized medical accommodations. I was angry that I felt rushed, misunderstood and unheard as a chronically ill patient in my specialists’ offices; I felt like a nuisance. I was angry that I knew I needed help and no professionals were listening to me. I was angry that I had to pick up the slack left behind by those with the fancy medical degrees, when I had hardly started college myself. I was angry that I was right about several new diagnoses and that my doctors didn’t figure them out first. I was angry that so many doctors put their ego before their patient. I was angrier at the realization that I must not be the only young person dealing with this massive burden.
I was angry. I was angry and frustrated and confused and lonely. I was angry and started demanding more from my healthcare team. As the anger continued to build, I worked with my dad to create a blog; writing was one of my first true loves, and I wanted an outlet for the chaotic mess of emotions that seemed to be controlling every move I made. I had zero expectations for this website, other than a few Facebook shares from supportive family and friends.
A couple of weeks before I launched my blog, I didn’t get angry; I was fucking livid. In November of 2019, I came across an article about a designer’s line at Paris Fashion Week, named Attention Seeker that included IV poles and shirts with SICK typed boldly across. In response to this collection, I posted a picture, on Instagram, of myself at one of my infusions, hooked to an IV pole with a custom made tee, reading: FUCK YOUR FASHION STATEMENT; I was flipping the bird too. 
I had become so angry, my silence finally broke; this post went viral, and my little personal Instagram account started gaining a lot of attention and followers; I took this opportunity to finally launch my blog.
I started using my website and Instagram page synonymously; I was exhilarated and mortified all at once. I was scared as hell to have my own platform to stand on, with microphones shoved in my face.
But I also felt ready; I was fuming and my anger had all been bottled up like fine wine, aging over the years, in my basement cellar. I realized I couldn’t simply uncork a single bottle of two-buck-chuck, with people looking to me. So, I walked to my basement cellar, bat in hand and bashed every bottle; I screamed and cried and laughed and danced as the glass shattered around me, to the floor.
Welcome to my current phase of the grieving process: acceptance. Acceptance is a never-ending journey; I don’t believe that anyone can accept every single part of chronic illness; how could we when we’re battling our own bodies, our homes? How do you accept an enemy into your home when their goal is to destroy everything in sight, when they promise only pain, suffering and trauma? This intruder has no warrant and there is no caution tape, no wall and no barricade that can keep them out; they will destroy.
As you look at your crumbled home, at what you have lost, you are flooded with emotions. You will begin to grieve. And in this grieving process, you will come to acceptance. You will eventually accept that you can’t change the damage done; you can’t put the ashes back together.
But, regardless, you realize you need a new home. And in building this new home, you need help; you need resources, supplies, a team of trustworthy professionals and a community. This community will be made of similar houses; partially built homes, crumbling on their own foundations, with paint peeling and with fresh embers burning, where a home once stood. 
Yet these homeowners will lend you their hammers and paintbrushes. They will deliver scraps of wood. They will bring a warm casserole and a hug. They will plant flowers in your new yard. They will hold you while you cry, and they will say, “I know this is hard, but look around you. We understand. You are not alone.”
As you look around, through teary eyes, you’ll be introduced to a new member of grief: beauty, and lucky for you, she lives right here, in the heart of this new community. Welcome home.
by Ashley | Mental Health
“I wish I had Crohn’s so I could be thin.”
“You’re so lucky you don’t gain weight!”
“I wish I had Crohn’s so I could eat whatever I want.”
“You don’t need to workout, you’re already so little.”
“I know Crohn’s sucks, but at least you look amazing.”
While my loved one’s meant no harm with these “compliments”, phrases like such can be extremely damaging to one’s body image, mine included.
Through my adolescence and young adult years, I feel fortunate to have been able to maintain confidence in my physical appearance. Sure, I’m not perfect and I’ve picked on my looks in front of the mirror, like I’m sure many of you have; I’ve have bad haircuts, worn regrettable t-shirts, my teeth are crooked and my skin sometimes breaks out. Yet, these are not the body image issues I struggle with deeply.
Upon looking in the mirror, I’m happy with what I see; dark blonde beach waves, deep brown eyes and a faint smile. Now, lift the veil. I’m still standing there, but the reflection has changed.
I see pale, bruised skin hugging my body; I see my hand hanging so limply from my sling after my shoulder inevitably subluxated for the third time that day. I see scars scattered like stars on my belly. My once defined abs, are lopsided from surgery and bloated consistently. I see the disappointment and anger as hot tears roll down the cheeks of a young girl whose only dream of playing college soccer was demolished. I see thinned hair and brittle nails from my medications. I see a body that hates me so much it wants to kill me.
“I wish I had Crohn’s so I could be thin.” Well, I’m not thin. My body is constantly starving and malnourished. This deprivation led my doctor to believe that I had an eating disorder. The only issue with this diagnosis is that I didn’t have an eating disorder. Yet, she negated my truth, dismissed my symptoms and continually gave me pamphlets and resources for ED support. Crohn’s doesn’t make you thin; the pain, medications, surgeries, scopes, nausea, vomiting, diarrhea, anxiety, fatigue, depression and more make you thin.
“You’re so lucky you don’t gain weight!” And YOU, my friend, are so lucky you can gain the healthy weight you need. About 6 months ago, my doctor explained to me that I was underweight and needed to put on some pounds; well, unfortunately since then, I’ve lost another 25 pounds. I haven’t weighed this much since I was 13. I would love to gain a little bit of weight if all it meant was some warm and happy bites of pizza, followed by a little movement later on. Part of why I don’t gain weight is because of my extended hospital stays. I am currently writing this from my hospital bed, unable to eat and unable to partake in all the yummy Thanksgiving food tomorrow. So, am I really so lucky to not gain weight?
“I wish I had Crohn’s so I could eat whatever I want.” All I have to say to this one is, what the fuck?! I don’t know where you acquired your IBD knowledge, but this disease typically eliminates a lot of different foods from your diet; especially your favorite sugary and fatty snacks. You can’t eat whatever you want without risking extreme pain, diarrhea, ER visits or a bowel obstruction. So again, what the fuck, dude?
“You don’t need to workout, you’re already so little.” Being thin is not my goal for working out, and I don’t believe it should be anyone’s goal. I think the goal of exercise is to be healthy. I workout because it helps my arthritic joints, relaxes my knotted back muscles, quiets my anxious brain and resets my headspace. Working out and being healthy/fit is way different than just being thin.
“I know Crohn’s sucks, but at least you look amazing.” First of all, you actually don’t know that Crohn’s sucks. Secondly, under the make-up, slim figure, curled hair, and lip-gloss is the same old sick girl that would rather have her health than her looks, any day.
To put it plain and simple, the grass isn’t always greener, my friend.
While I’m not here to propagate, nor negate the validity of “thin privilege”, I just want to bring awareness that there are many factors that influence your weight. Whether a person is underweight or overweight, we don’t get to judge. I am too thin because of an illness; yet there are so many other diseases out there that cause you to gain weight instead. We are so quick to diagnose a female like me with an eating disorder, and we are too quick to label a person who is overweight as “lazy”.
It is not our place to put these labels on one another. You never know what someone is going through.
So today, while you are sitting around the dining table, inhaling glorious mashed potatoes, warm turkey and pumpkin pie, remember the “thin” girl in the hospital, without her family and who’s unable to eat.
Thin isn’t always a privilege.
Ashley
by Ashley | Mental Health
According to NASA, the moon’s purpose is to make the Earth a more livable planet through the dark hours of night, as the brightest and largest object in the sky.
While she may not be large, Luna’s light shines endlessly and makes my world a much more livable place, especially at my darkest hours.
This sweet little Aussie is my Emotional Support Animal; after joining my life, I quickly learned that Luna battles severe anxiety as well. Over the past year and a half, we’ve been slowly overcoming our angsts together.
When I’m in pain, she protectively and gently brings comfort by lying next to me; when I nap, she positions herself across my legs to keep an eye on me; when I’m crying, she immediately runs to my aid by giving me a literal hug and ferociously licking my face. Luna has become so in-tune with my emotional needs, that the slightest sniffle will send her scrambling across the hardwood to save the day, when all I actually needed was a Benadryl.
Although she is a notorious sock thief, and her hobbies include shredding sticks inside the house, this little monster has known exactly what to do for me, with no formal training, since day one.
Much like the Earth and Moon, my world would wobble off its axis without her.
Do you have a Luna in your life? I would love to here about her or him.
Ashley xx
by Ashley | Mental Health
To the doctor that looked at my 14 year old body that was starving and malnourished and deemed me anorexic, regardless of how much I, or my family, tried to argue otherwise… I have anxiety now.
To the male nurse that violated my boundaries at age 15, after surgery, when I was most vulnerable by exposing my naked and battered body to a room full of doctors, nurses, family and strangers… I have anxiety now.
To the same nurse, who prematurely stole me from recovery and caused me to hyperventilate after major abdominal surgery on the way to my pediatric room because you rambled on about the extreme pain I was going to face… I have anxiety now.
To my freshman year professor that received an email regarding my specified medical accommodations established by the university, and simply asked, “So, what’s wrong with you?” loudly and amidst a room of my peers… I have anxiety now.
Although anxiety, to a certain capacity, can be healthy for humans, it can easily overstay its welcome and manifest itself into a harmful darkness; rather than priming our problem-solving/critical thinking skills, it overtakes the brain and controls our every move like a marionette and his puppet.
For years, I moved through life with limbs tethered to these strings; I doubted whom I was, lost my voice and questioned every aspect of my existence.
Although I’ve tried, no magnifying glass can spot the start of my anxiety on my life’s timeline. Not only do I believe I was genetically predisposed to this mental illness, but I also believe my health (or lack thereof) caused it to escalate immensely.
No length of therapy can help me solve the source that so viciously fed my inner monster; from a young age I always needed to have the best grades, be the best athlete, have the best clothes, etc; I held myself to impossible standards.
Though present, I could shove this monster to the darkest corner of my brain to hide it from the outside world. After receiving my first diagnosis after striving for a life of perfection, this monster painfully clawed itself to my surface and took over my body, leaving only my physical appearance for the planet to see.
While my physical health spiraled down and down, so did my mental health; I was constantly worried about the next day, my next dose of meds, my next wave of pain, my next appointment, my next meal that my stomach would allow me to eat; would I need surgery? Different meds? Would I live?
For years, my brain has functioned in fight or flight mode. It hasn’t been until recently, that I’ve started to defeat this monster. After many trial and errors with anti-anxiety medication, I am now taking Cymbalta. I have found success with this drug, and I’ve finally found some relief from this constant, lingering, dark cloud. I am also working with a lovely therapist who has her own past with chronic illness. While our main focus is my anxiety, she has helped me with nutrition tips, sleeping tips, travel tips, etc.
Her methods of coping with anxiety are truly the first to work for me; her main focus is on emotional processing. Whenever my mind starts to spiral, I am supposed to sit with this feeling of anxiety or panic; I acknowledge its presence. I sit in silence and identify where the anxiety is manifesting itself in my body. What does it look like? Color? Texture?
I then start to talk to my anxiety; I recognize it and kindly explain that it doesn’t serve me. I then let it go.
I also use visualization and old memories to distract my brain; after acknowledging the anxiety, I ask myself what feeling I’d like to replace it with (i.e. strength, comfort, safety, happiness, peace, etc). Then I bring up a memory that triggers these emotions. For example, I imagine Hawaiian beaches from my trip to Maui if I desire peace; I visualize myself sitting on top of Angel’s Landing at Zion National Park when I seek strength.
This works wonders for me.
The last piece of my approach is meditation. Meditation and I have had a frustrating relationship, and we still sometimes don’t see eye-to-eye. Some days she embraces me with open, warm arms and other days, she slams her front door right in my face. My therapist has taught me so many useful hacks that I want to share with other wanna-be Zen masters.
- You don’t have to be in an upright, seated position to meditate. I have joint and spinal problems + I have weak connective tissues due to hEDS that cause my muscles to feel weak and fatigued; there is no hope in finding peace and stillness when your body is screaming “WTF!” I like to lie down, in bed, with pillows supporting my lower back; I also cover myself in a weighted blanket.
- You don’t have to meditate for an hour or even five minutes for it to be meditation. Meditation can be as simple as a 30 second breathing practice in the grocery store checkout line.
- If you stress too much about your mind wandering during this time, I recommend using a guided mediation app! I do this often still, but it’s also a great hack if you’re new to the practice.
- You can’t be “wrong” or “bad” at meditation; I am still working on accepting this because I’ve struggled with this practice for many years.
- I do a “Four Lights” meditation first thing in the morning. To put it briefly, you sit in a meditative state and close your eyes. You first visualize a light coming from above; step into this light. Feel its comfort, warmth, color and energy. I find this light comforting. Then, turn this light off, and visualize a beam of light coming up and out of the earth and step into it; what is this light like? I personally find this light to be energizing. The third light is sunlight. Think of the sensations felt on a hot summer day; I envision myself at the beach. This light makes me happy. The last light is your inner light; where is it in your body? What does it look/feel like? Visualize it at its start and then let it spread through your body until it seeps from your extremities and surrounds you. You are now in a safe bubble. The idea is this light is always within you and you can bring it forward at anytime you need to.
Although I have found a trusting alliance in these practices, I still battle this inner monster daily. I’m slowly escaping this darkness, and I feel more like myself than I have in years. For me, this would have never happened without the help of my medication and therapist.
The emotional trauma that accompanies illness is not talked about enough. This is a gentle reminder that it is okay to seek help. It’s okay to go to therapy. It’s okay to take medication.
“When the past has passed from you at last, let go. Then climb down and begin the rest of your life. With great joy.” – Elizabeth Gilbert (Eat, Pray, Love)
I am always here as a listening ear if you have no one else to turn to.
Love you.
Ashley xx
Then came the fatigue, but everyone around me seemed to frequently discuss how exhausted they were, so I was tired too. Then came the bathroom urgency; I had to go, and I had to go NOW, but the thought of sharing this information mortified me into silence.
On the contrary, in this time, there was also a ton of good and sense of normalcy in my life. I worked summer jobs, traveled within and outside of the country, played three years of varsity soccer; I won a district championship, went to state twice and was named captain my senior year. I graduated high school, spent countless hours with my closest friends, partied, started my first year of college and partied a lot more. I did stupid freshman things, held my friends’ hair back after long nights… the whole “college experience”. 
As you might imagine, this lifestyle was not sustainable for me; it became a lot harder to stay in denial. To be fully honest with you, it took a night of drinking until I blacked out, followed by one of the worst hangovers of my life to realize it was time to go home; home to my mom, home to myself. One semester away at college, pretending I wasn’t chronically ill, attempting to keep up with my peers brought me out of denial.
I had become so angry, my silence finally broke; this post went viral, and my little personal Instagram account started gaining a lot of attention and followers; I took this opportunity to finally launch my blog.
Yet these homeowners will lend you their hammers and paintbrushes. They will deliver scraps of wood. They will bring a warm casserole and a hug. They will plant flowers in your new yard. They will hold you while you cry, and they will say, “I know this is hard, but look around you. We understand. You are not alone.”
As you look around, through teary eyes, you’ll be introduced to a new member of grief: beauty, and lucky for you, she lives right here, in the heart of this new community. Welcome home.
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