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.