THIS IS NOT MEDICAL ADVICE. THIS IS PERSONAL EXPERIENCE. PLEASE DISCUSS ALCOHOL CONSUMPTION WITH YOUR DOCTOR BEFORE DRINKING.
Though I started drinking in high school, the conversation regarding alcohol didn’t come up with my doctors until I was 18 and getting ready to leave for college. Looking back, I so badly wish I had more guidance.
I wish someone had been able to warn me about the consequences of drinking alcohol with chronic illness. I had to learn the hard way. I’m hoping this can be a little guide to make the learning process easier for you.
It’s no secret that you should avoid alcohol when you’re sick. If you’re under the weather with a stomach bug, doctors recommend water & electrolytes, not vodka (I hope).
But things become so much more complex with chronic illness. When you’re sick 24/7 you have to figure out how to have a social life; as you get older, social gatherings often include drinking. So what do you do?
Right before packing up & heading off to school, I saw my rheumatologist for the first time. My Crohn’s seemed under control, but my joints were struggling really badly. My disease was being managed with Humira at the time, and blood work showed I had built up antibodies to the drug. Because of this, and my joint pain, my rheumatologist switched my treatment to Remicade infusions (an immunosuppressant); I would also take a weekly dose of Methotrexate (another immunosuppressant).
At the end off the appointment, he sat me down, looked me in the eyes and said something along the lines of:
I know you’re going to college. I know you’re probably going to drink alcohol. It’s okay to drink in moderation, but you need to be mindful of how tough the medication already is on your liver. Be careful and we will monitor things through blood work.
I heard this and thought, “Let’s get shitty drunk ALL of the time!!!”
He was trying to give me an inch, and I took about 7,000 miles. How I long for that inch now.
I was drinking, at the minimum, 2-3 days a week. I wasn’t sleeping enough. I wasn’t taking my medications diligently. Big red flag.
Many medication labels often read: “Do not drink alcohol with this drug”.
Do you know why?
The human body struggles to metabolize alcohol & medication simultaneously…. it really can’t. It can only choose one at a time.
So, personally, it would take longer for me to feel the effects of the alcohol, which usually led me to over drinking. When the alcohol would hit, it would hit hard.
I would ALWAYS wake up drunk. Sometimes, the effects would last well into the next day. I would do homework drunk. I’d go to class still drunk.
I would vomit every time I drank. I would vomit the next day, sometimes it just happened, and sometimes it was forced.
And then the dreaded hangover would hit. The hangovers were brutal.
When you’re chronically ill, your symptoms can often mimic a hangover. So to add binge drinking to the situation was extremely detrimental to my physical health & quality of life.
I made it through fall semester of my freshman year before having to take medical leave. Was I shocked? No. My naïvety and lack of thoughtfulness had finally caught up to me.
But STILL… this wasn’t enough to get me to stop drinking.
I didn’t stop until last fall, in 2019, when it started really affecting my mental health and those close to me. I would drink, lash out & have horrendous anxiety/panic attacks.
I took a step back and examined my behavior. Lashing out is so NOT ME. I really hated seeing these toxic patterns emerge. I wasn’t fun. I was miserable.
I started leaning more and more into cannabis (both socially and medicinally). Last fall, my physical health was on the quick decline due to mold illness I didn’t know about (I was living in a house with black mold). Weed became my lifeline. In December, I wound up in the ER for an EKG & fluids because I had a single cider with dinner and woke up the next morning with a heart rate of 200 BPM. I felt like I was dying.
I’ve hardly had any alcohol since.
I hope you read this and choose to make different decisions. I hope you realize you can have the college experience without wreaking absolute havoc on your body.
You cannot keep up with your healthy friends. I wish someone had flat out told me this.
Whether you choose to be the party stoner, the designated driver or you simply say NO to partying, please know it’s okay. It’s okay to not get shitty drunk every weekend. It’s okay to protect your health… I HIGHLY ENCOURAGE IT, in fact. But protecting your health can look different for different people. Don’t judge anyone else’s journey.
Listen to your body, and actually honor what it says. Only you know how you feel.
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.
I am a full time patient, holding temporary residence in Limbo.
While this is a place I’ve often dwelled, I’ve been lucky to escape. Time and time again.
But, here I am, unpacking my bags and dusting the shelves that hold all of my past pain, sadness, frustration and grief. This home that I’ve grown to know feels so small, cold and lonely.
As I’m rifling through the messy drawers, I find all of my old receipts. I notice one receipt that is worn, withered, torn, fading and crumpled at the bottom; I know before I even grasp the edges that it reads “Crohn’s Disease” on the other side. This little piece of paper was so naïvely placed in here, over seven years ago, as if it’d be the only one.
I start grasping at the receipts like a magician grasps at the endless train of scarves from his sleeve:
Crohns, Humira, Prednisone, Methotrexate, surgery, opioids, infusions, Remicade, Fibromyalgia, Spondylitis, Arthritis, Myofascial Pain, Amplified Musculoskeletal Pain, POTS, Ehlers-Danlos Syndrome, chronic pain…. the receipts are never ending.
And while I’m sitting in the waiting room of the hospital’s imaging center, I can’t stop thinking about that damn drawer. How much more can it take? How long until these small pieces of paper pile so high the drawer won’t shut?
It’s questions like these that continue to flood my head today during my Gastric Emptying Study, waiting to find out if I have Gastroparesis. Waiting to find out if I’m adding to the receipt drawer or if I’m being left at the drawing board with a dulled down piece of chalk and a depleted spirit… again.
I’ve been waiting for this test since September. I’ve been waiting for this test since the first of many ER visits this fall/winter. I’ve been waiting since my two hospital admissions in between. I’ve been waiting since I visited the Mayo Clinic in January. I’ve been waiting for answers for far too long.
Yet, this isn’t surprising. Waiting is not a foreign concept to chronically ill patients.
We are constantly waiting for referrals, prescription refills, insurance’s approval, appointments, scans, blood work, labs, results, answers, plans, hope.
And today, I’m not just waiting for my study’s results. I’m waiting to get my life back. I’m waiting to feel like myself again. I’m waiting for my distended and bloated belly to shrink. I’m waiting to stop feeling nauseous every day. I’m waiting to see if I have Lyme… if I have SIBO… if I have mold illnesses.
This is the state in which I live; this is limbo, my humble abode. Welcome.
While I hate this home, I know this is a temporary stay. I know I will get the answers that I’m so desperately seeking. And to be clear, when I get them, I won’t be cured. I won’t be healthy. But at least I will have a plan moving forward. I will have a diagnosis to identify with. I will feel validated. You see, the ticket out of limbo is a diagnosis. It’s a plan. Otherwise, you’re stuck.
And though I feel stuck now, I know I’m anything but; I am reminding myself that this is temporary.
But for now, I have to wait.
While this reality is mostly frustrating, it’s also incredibly humbling… for my patience has come from being a patient.
Sturdy, but always at the risk of shattering in one fell swoop.
How do you find strength, when your body, your home, is falling apart? Any movement risks another piece to fall out of place.
I remember what it was like to live without this fear, this pain, this burden.
There were warning signs… but I ignored them.
I, instead, put my body through 15 years of a physically brutal sport for any human: soccer. My passion allowed me to play through the warning signs; the concussions, sprained ankles, broken bones, swollen joints, torn tissues, pulled muscles, ankle surgery, muscle contusions… the list goes on.
I eventually had to cut ties with this love of mine… and I’m still not quite fully healed from that heartbreak; it honestly rivals the painful wounds plaguing my body, which I’m sure owe some part of their existence to the beautiful sport I dedicated my young life to (a story for another day).
As a once dedicated athlete, who pushed her body further than any human should, it’s hard for me to accept that I can hardly type this out from bed, without my fingers and wrists threatening to dislocate.
I once had a six-pack… now replaced with a bloated and lumpy tummy, uneven from surgeries and missing organs. There are scars, emotional and physical, scattered across.
The powerful legs that swiftly carried me are now thin and shaky and often fail me.
I weighed in at 110 lbs. at Mayo… and I know very little of this is muscle. I haven’t weighed this much in longer than I’d like to admit.
Two days ago, I was able to leave the house, drive myself to the grocery store… and this was a celebration.
This celebration quickly turned to worry, as I had to figure out how to carry my two grocery bags across the Trader Joe’s parking lot without dislocating my shoulder… especially because, when I was inside, I had already popped my wrist out of place.
This simple day that signified a leap in progress and strength for me, was called a “lazy day” by my cashier.
He went on about how jealous he was that I wasn’t at work… if only he know that I never get to leave work.
I am constantly working to keep this body together. To keep it functioning. To keep it moving. Breathing. Eating. Resting. Healing. Learning. Advocating.
Lazy? Living in a body made of glass is anything but.
I am trying my best to keep from shattering, but that is a risk I cannot fully control.
The once warm and thriving tissue that made up my being has hardened into brittle glass. This is part of my reality with Hypermobile Ehlers Syndrome (hEDS). It’s a part of my life that I am struggling to find any love for. I have battled to love and advocate for my body as these diseases have taken over it; how do I love the fragility and delicacy that threaten my being every single day.
I don’t feel safe in this body, this home. And you shouldn’t throw stones at a glass house, right? I preach to love your body and own your scars, but I want to throw fucking rocks at this glass house of mine. Like I have for years. It’s high pain days that make me start to shatter.
Last night, I was on the brink.
But today, I vow to myself to instead grab the glue and work to patch these cracks that are so close to crumbing in on me.
I will leave my bed, to move and breathe and eat. I will work today to show my body love, even though I don’t want to. I am still in so much pain, and I’m preparing for another rough night.
I am still working to forgive myself for the lack of care over the years, that has led to such a delicate home.
“What does a typical flare day look like for you?”
This is a common question for me recently; rather than type out a boring summary of my day, I thought I’d show you.
Yesterday, I had no appointments or pharmacy runs, so I took this day as an opportunity to answer this question; I recorded everything I did from morning to bedtime… multiple POTS episodes, my cannabis use, yoga & more.
Cannabis saved my life.
Pain has riddled my memories with darkness. I vividly recall the sensation of a dozen knives being plunged into my abdomen and then being violently twisted around. At the time, I was lying on the cold tiles of my bathroom floor with hot tears rolling down my face, agonizing screams leaving my fragile body, all while my family watched in utter horror. It was at this moment that I decided I would rather end my life, than live through this torment, untreated, everyday. I was 15, pre-Crohn’s diagnosis.
I experience pain every second of every day; literally 24/7. I suffer from not one, not two, but five illnesses that cause debilitating pain. I have hardly left bed in days because it has been so disabling.
As I’m writing, I’m strapped to a heating pad, after taking Percocet and smoking. I can’t even tell you exactly where I’m feeling the pain… because it’s everywhere.
When I was younger, before I turned to cannabis, I popped Hydrocodone around the clock, every four hours. Post diagnosis, I don’t believe I took a single final without being drugged up in high school. Finally, the day came when my doctor deemed me overly reliant on Hydrocodone; he cut me off and instead prescribed me Oxycodone, a stronger narcotic… nice.
I won’t go too far into detail, but one of my first incidents with Oxycodone quickly exemplified the dangers of it & how easily it is to become addicted.
When I finally tried smoking weed, medicinally, I experienced something transcendent: pain relief. REAL pain relief. Happy tears came to my eyes because I felt genuine reprieve. I noticed, not only my pain easing up, but also a release from my relentless nausea, food aversions, insomnia and anxiety.
One question that comes up frequently is about why I don’t just eat edibles to preserve the health of my lungs. I typically don’t have much luck with edibles, and I believe it is because of my malabsorption issues. This is why I rely mostly on oil concentrate or flower. I like heavy indicas to sleep, but I typically like sativas/hybrids during the day.
My favorite strains include:
Green Crack (oil)
Girl Scout Cookies
Jack Herer (fun fact: this is the first strain I ever smoked)
Don’t get me wrong; narcotics still have their place. Like I mentioned, I’m on Percocet now. When I battle flares, like I currently am, weed alone isn’t enough. However it has limited my intake of these meds to 1 or 2 pills max/per day, rather than a dose every 6 hours.
When I’m not flaring, I still battle chronic pain; however, I am able to ditch the narcotics and use cannabis, CBD, yoga, acupuncture, massage therapy, etc.
I fear that, without weed, I would face addiction; the combination of chronic pain and my addictive genetics can be extremely dangerous once you throw opioids in the mix. Not to mention, opioids tend to further suppress my appetite, while pot improves it; this is so important for me as I’ve been underweight for the majority of my life, and I struggle with malnourishment due to my Crohn’s disease and multiple bowel resections.
There are many stigmas involving marijuana, and it’s time to debunk certain misconceptions about this drug. Some people believe that cannabis makes you lazy; it can make you lazy, but it doesn’t make ALL people lazy ALL of the time. With the right strain, it makes me way more functional than I am without it. I can complete much more throughout the day with this medicinal aid.
Smoking is one of the first things I do when I wake up and one of the last things I do before I go to bed. I am an early morning person, and I cherish my wake-n-bake seshes with warm coffee. It allows me to combat my morning nausea and eat breakfast. I’m not agitated, and I have greater patience. When I’m not flaring, I can clean and complete chores without destroying my back. I can shower without needing to rest in bed for an hour afterwards. I can concentrate on my homework better. I can peacefully sleep through the night; I now love mornings, rather than loathe them. I am a better person because of it.
If you choose not to smoke, I respect your decision; but please don’t judge me, or anyone else, for using this natural solution medicinally. If you’ve never suffered from chronic & debilitating symptoms, I really don’t give a shit about your opinion. It’s one of the only resources I have that makes my life manageable. I’m just trying to survive, and if you cannot understand that, shame on you.
I would rather be labeled a stoner than subject my body to addiction or possible overdose. I would rather be a stoner than end my life because the daily suffering is too great.
This is a common phrase heard by the invisible illness community; while people may think it’s a sort of compliment, it’s actually extremely invalidating and frustrating. We constantly feel misunderstood, judged and ostracized by those around us (even close family, friends and healthcare professionals).
What do you do when you feel this way? What do you do when your body throws the fucking kitchen sink at you, suddenly making you feel all alone? You pretend. You give into the invisibility of your disease and mask it the best you can. I am exhausted from hiding my illness from others, and this is one reason for starting this blog.
After beginning to share my life with chronic illness, I decided I wanted to expand the dialogue. I enlisted the help of a few incredible, inspiring and BADASS young women who all battle at least one form of invisible illness (mental and/or physical). Their stories help to shed light on invisible illness and break down certain stigmas surrounding this community.
Please read about their incredible health journeys; waging constant battle against your own body is so incredibly difficult, but you are not alone. We understand you. We hear you. We see you.
Meet Hannah Martin.
Invisible Illness: Depression
SUICIDE TRIGGER WARNING!
“I’ve had quite the mental health journey over the last eight years. One of the hardest parts about having major depressive disorder (MDD), besides the recurrent depressive episodes and years of therapy, is how misunderstood it is.
Even with all the internet exposure mental health has gotten throughout the past few years, there is still a lot of stigma and I still have to be extremely careful where and with whom I share my experience with.
I’ve had to hide my disorder with teachers, employers, and even friends who think those with depression are just weak minded.
I used to hide my MDD from everyone because I didn’t want to freak people out. Over time, however, my depressive episodes got worse. I felt like I couldn’t talk to anyone about it in an honest way and had horrible self esteem because of it.
It took me until I was suicidal and ready to give up completely that I was finally able to tell my mom how bad I was getting. This was during Spring Break, my sophomore year of college. I had driven home to the Seattle area from Boise and the only thing on my mind was how I planned to end my life that week. It took me five days to finally settle on a plan. I almost went through with it but I just decided to give it one more day.
I went to sleep that night and the next morning my mom found evidence of what I had planned to do. She asked me if I planned to harm myself. Tears formed in my eyes and she asked me if it was worse than that. I was able to nod my head yes and then immediately started sobbing. My mom, who is a real life super hero, immediately jumped into action. She called a suicide help line to figure out what to do in this situation. They instructed her to take me to the ER. I spent the night there and was able to calm down enough to be sent home.
I saw my psychiatrist a few days later to put together a plan of action. My psychiatrist put into words something I had never heard before. He explained to me that the brain can become so depressed that it’s considered damage. That’s what had happened to me. My brain was damaged from how long my depression had gone untreated. I needed time to heal. He recommended that I withdraw from school and enroll in a rehabilitation-like therapy program for people with extreme mental illnesses like mine.
This was the first time I had ever experienced someone take my problem seriously and this was the first time I ever felt like my disorder was valid and that I wasn’t just being dramatic. For the first time in years I had hope that I was going to be okay. It wasn’t any instant fix but my active suicidal thoughts became passive ones and after about 150 hours in therapy over the summer, they vanished entirely.
I’ve done a lot of work on myself since then and have learned to be more vulnerable when I need help. I still have bad days and have even had a couple depressive episodes since then. I’ll probably be working against this disorder for the rest of my life.
I think of it as having a sensitive brain that requires extra attention. I do a lot to stay healthy every day. I constantly base my decisions off how it will affect my mental health. Sometimes I’m forced to choose against my mental health, especially while being a student.
I just try to regulate as much as I can. Sometimes I miss assignments after a bad mental health day. Ive learned to forgive myself on bad days and work ahead on good ones. I judge myself less and because of that I’m able to push myself to succeed.
The cool part about all of this, because it’s been a pretty bleak story up until this point, is that I finally found something I can be passionate about. I’m currently studying psychology in hopes of one day becoming a clinical therapist.
Having something to be passionate about has made everything I’ve gone through worth it.
I feel so much more sure of myself and I’m so so so glad I lived to see myself get to this point. I know I’ll struggle in the future but I have a purpose and several emergency plans and a whole mental health team in place to prevent another life threatening brain injury.” -Hannah
If you struggle with depression and are considering self-harm or suicide, please seek help.
National Suicide Prevention Lifeline: 1-800-273-8255
“Connect” to 741741 for FREE help from Crisis Text Line
Meet Emma Madsen.
Invisible Illnesses: Type 1 Diabetes & Celiac Disease
“In seventh grade I was diagnosed with Type 1 Diabetes as well as Celiac Disease. I was in DKA and miserable. It didn’t hit me that I would have these two incurable diseases for the rest of my life and when I did realize it, it hit me hard. Type 1 is hard to deal with mentally and physically and for all my friends with diabetes, you are all so incredibly strong.
I am currently recovering from Diabulimia which is where you restrict or don’t take insulin in order to not gain weight.
Disordered eating and many body weight and image issues may come with any diagnosis, and no one should feel isolated or ugly because of their disease or disorder.
We are here and visible and beautiful.” – Emma
Meet Hannah Hilgeman.
Invisible Illness: Multiple Mental Illnesses
“I have suffered at the hands of psychiatric conditions for the majority of my life; not only until I reached high school did they become truly debilitating. I tried numerous treatment methods with little success.
Eventually the idea of a service dog was brought up. Fast forward and Winnie and I have been working together for a year and a half. Her tasks help mitigate my disabilities and allow me to live an independent life. While she does not cure my afflictions, she helps me manage them in a way I didn’t ever think was possible.
There is challenge to it though. Aside from the dog attached at my hip, I appear as a normal, healthy young adult. My illnesses, which were once invisible, are now made visible with the use of a service dog.
While I certainly get unwanted comments and invasive questions whenever I am out in public, it is worth it to be able to live the quality life I deserve.
In a time where I was consumed by so much darkness, Winnie came to me as a guiding light and my life has been brighter and filled ever since. She is my guardian angel and I know that together, we can face the hard things.”
Meet Koda Heyrend.
Invisible Illness: Lupus
Koda has struggled to confirm a Lupus diagnosis with her physician, despite her blood results testing positive for Lupus three different times; they instead wrote her illness off as “chronic lower back pain”. However, Lupus is so much more than this.
According to the Mayo Clinic website,”Lupus is a systemic autoimmune disease that occurs when your body’s immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart and lungs.Lupus can be difficult to diagnose because its signs and symptoms often mimic those of other ailments. The most distinctive sign of lupus — a facial rash that resembles the wings of a butterfly unfolding across both cheeks — occurs in many but not all cases of lupus.
Some people are born with a tendency toward developing lupus, which may be triggered by infections, certain drugs or even sunlight. While there’s no cure for lupus, treatments can help control symptoms.”
Koda is very sensitive to sunlight; she has to limit her time exposed to the sun, or else she breaks out in hives.
She is not the only person, living with a chronic illness, who struggles to gain the proper validation & diagnosis from her doctors. Getting recognition for chronic pain is hard enough, but it is that much more difficult when you are a female. We are dismissed far too often.
It has been an honor to know and work with these ladies. I can’t thank them enough for their courage & vulnerability in sharing their stories.
Also, a BIG thank you to our lovely photographer, Randi. Her work is incredible.
I was recently contacted by a news editor for Boise State University’s student newspaper, The Arbiter, for an interview about this blog. This article not only explains the purpose of this blog, but it also touches on a few projects I have completed in the short time this website has been live.
One project, that went viral, was my response to Paris Fashion Week 2019 when a fashion designer used fake IV poles and t-shirts with “SICK” across the front for his line, “Attention-Seeker”; the post is on my Instagram account: https://www.instagram.com/ashley_carnduff/. I have received incredible feedback, and am excited to say that I have been in touch with a graphic designer about making “Fuck Your Fashion Statement” tees to sell.
Another project, that led to this interview, will be published soon. I had the pleasure of working with an amazing photographer (www.lemonandhoneyphotos.com/contact) and a group of badass young women, who all have an invisible illness. I can’t wait to share it soon!
In the interview for my university’s newspaper, called “Student creates a support system for those battling chronic illness”, Celina Van Hyning writes:
An estimated 7% of teenagers and young adults live with at least one ongoing health condition that can disrupt daily life, according to a National Health Interview report. These conditions can range from mental illness such as depression and anxiety, to physical conditions such as asthma and diabetes.
In 2013, 15-year-old Ashley Carnduff, a former secondary education major, was diagnosed with Crohn’s disease, an inflammatory bowel disease that causes inflammation of the digestive tract which can lead to abdominal pain, weight loss and malnutrition. Since then, she has been diagnosed with several other autoimmune illnesses in addition to Crohn’s disease.
Until recently, I’ve never been empowered by my pain; I’ve been ashamed of it. For as long as I can remember, I thought that pain meant weakness. Through my childhood and adolescence, my pain has been blamed on the wrong aspect of my body. I thought I felt immense pain because I was weak not because I was in immense pain.
When I finally sought medical advice, my pain was downplayed because I was going through puberty and “little girls have mild discomfort” with their periods (said to me by a mild-aged man…. that’s a rant for another day). I blamed my pain on my femininity and bottled it up. I felt embarrassed for seeking help because “everyone deals with it”. I didn’t want to be the “complainer”, the “diva”; I was “emotional” and “going through a normal teenage girl phase”.
I didn’t suddenly wake up sick; I was slowly dying for years. I finally hit my limit; all the pain I had bottled up, bubbled to the surface. I was 15, severely underweight, anemic, starving, malnourished, with blood-work off the charts; my intestines were swollen shut and riddled with ulcers. The disease had taken over my anatomy, my mind, my humanity; I was a skeleton… and I had no idea. It was my understanding that this was “normal”.
Ironically, I was completely blinded by the lack of visibility. I looked “fine”, even to me. That’s one of the cruelest parts of these illnesses; they’re master manipulators and hide in plain sight. When I looked at my thin and starving body, I didn’t ask too many questions because I constantly received compliments on my appearance. I turned my eye from the bruises on my spine, the dark bags under my eyes and the ribs jutting out from my abdomen because I had a “naturally” slim figure, and that made me feel confident about myself as a teenage girl… go figure.
It wasn’t until I was curled up on the bathroom floor, sobbing, screaming in pain, trying to force myself to throw up that I knew something was wrong with me. This disease had manifested itself into every fiber of my being; my body was killing me and I had no idea…but according to all the “professionals”, didn’t everyone go through this?
Suppressing my pain for so long, in an effort to be “tough”, led me to have some issues with the idea of femininity. I felt like expressing this part of me was (in a fucked up way) equivalent to expressing weakness. So instead of asking for help, I pushed through the pain; I became an important part of my school & club’s soccer teams. In my mind, I was balancing out my feminine side with this tough athlete façade; in retrospect, I subconsciously wore darker make-up and darker clothes as well. I was quiet, kind and well behaved; since this was the stereotypical idea of femininity in mind, I felt the need to disguise it a bit. I didn’t want to be the weak one, right?
Recently, I’ve done some serious introspection; this has come from my yoga course and practice. I have realized that the idea of femininity and masculinity is not linear in any way, shape or form. I started embracing who I am, as a human… not necessarily a female.
I’ve realized I can be, both, gentle and strong; quiet without being meek; compassionate without being a pushover. I’ve recognized you can be in pain and not be weak. You can ask for help and not be weak. You can be sick and not be weak. In fact, I’ve learned that anyone dealing with these types of illnesses is anything but weak. I’ve validated my own pain, despite being a woman… because a lot of my doctors won’t. Crohn’s doesn’t discriminate based on sex, so why did my doctors? Why was my pain less valid?
Let’s stop telling woman to “man up” and let’s start recognizing everyone’s pain as true, regardless of their background. “Feminine” or “masculine”, pain is pain.
It’s no secret, hospital life is isolating.
Those that enter the ER with a broken bone or the common cold kindly wave farewell to this confinement as they drive back to “normal life” a few hours later.
However, those with chronic illnesses don’t get to leave the isolation at the door.
For me, isolation has become a consistent companion. My illness forces me into solitude to survive.
I need lots of rest. I can’t typically partake in normal college kid shenanigans; alcohol and partying leaves my tank on empty for the following week, and it only strengthens my relationship with isolation.
You’ll often see me absent from social activities, only spending time with my boyfriend Marcus, you won’t hear from me, and I’ll be locked away in my bedroom, sometimes for weeks on end. I promise I’m not being an asshole. I’m just trying to survive.
Please do not take pity on me for spending time alone. Often times, isolation is the best medicine.
Although isolation is healing, you must establish a firm boundary with it. As we all know, excessive seclusion can lead to loneliness. Even if you need to spend time alone, you shouldn’t ever go through this battle alone.
To embrace isolation and avoid loneliness, I suggest establishing a strong support system. This person, or group of people, should be impeccably trustworthy. They should love you without question, listen to you without judgment and support you without doubt. If they don’t believe your symptoms or they bypass your feelings, they are not a good support system.
I have been absolutely blessed with the support in my life. My mom, dad, step-mom, brother, sister-in-law and so many more offer constant aid. I know I can call them at any time with an anxious mind or aching body, and they will help me in any way they can.
Another huge blessing in my life has been my boyfriend, Marcus; his support is particularly special to me because of our relationship. He offers me his shoulder to cry on, runs any needed errands for me and loves me for who I am. He’s picked me up off of the bathroom floor, held my hand in the ER and sacrificed his own comfort for mine.
I know I can lean on my support system at any time; this is why isolation is a healing tool for me. While I may be locked away in my bedroom, these people are all just a phone call away. (I also have several friends I could go on and on about, but I’m trying to keep it concise. I love you guys.)
While grateful for my support system, I understand some people are not as fortunate; they don’t have friends or family to lean on. No one should have to go through this “invisible” life alone; find your support that helps make you visible. If you don’t have anyone in your life, I promise I will be your support system.
This shit is hard.
(Direct Message me on Instagram: @ashley_carnduff & I will offer any support I can.)
And to everyone in my life, just remember I’m still here for you, even if I’m lying in bed strapped to a heating pad.