WTF is Crohn’s?!: My Life With An Autoimmune Disease

I had originally intended to use this blog solely for fashion and beauty purposes, and I’ll get to that in due time, but upon some soul-searching, I’ve realized my passion for fashion and beauty was sparked as a result of dealing with my health issues.  So I wanted to share my story in the hopes that it might inspire someone else to look for their silver lining. 

Firstly, I will answer a question that I often get whenever someone finds out I have Crohn’s disease: what is it??  Crohn’s disease is an autoimmune disease (when your immune system attacks your own body) that affects the entire digestive system, from the mouth to the anus (super fun!).  Mayo Clinic describes Crohn’s disease as “an inflammatory bowel disease (IBD). It causes inflammation of your digestive tract, which can lead to abdominal pain, severe diarrhea, fatigue, weight loss and malnutrition.”  It affects everyone differently and can be extremely painful and debilitating. There is no known cure but, with the right medication and lifestyle changes, it can be treated effectively.

I was diagnosed when I was 16-years-old, but I have been living symptoms since I was 15.  When I was first diagnosed I was lucky enough not to have any of those debilitating symptoms, though I was told I had severe Crohn’s disease.  I spent some time in the hospital but, to be honest, I didn’t really believe the “severe” part the doctors were telling me. For the most part, I was still able to do all of the things I wanted to do, sometimes I even forgot I had a disease.  So, apart from taking my medication, I didn’t really take my diagnosis seriously and continued about my life the way I had been.

Things started to change my first year away at college.  I had dreams of being a musical theatre star and started a one-year introductory program.  I spent my days singing, dancing and learning how to act, my whole life revolved around the theatre.  I have always been hyper-critical of myself and this only intensified during my time in this program. The entertainment industry in itself is highly competitive, stressful and, at times, not overly forgiving.  There was a lot of pressure, mostly from myself, to be perfect.

No one really knows what causes Crohn’s but there are many factors that contribute to aggravating its symptoms.  Stress is a big one, something I learned the hard way. That year at school I started developing the first of many Crohn’s-related complications.  My hair started to fall out and I developed arthritis in my knees and ankles, which restricted my ability to dance. This, paired with my worsening anxiety, quickly brought an end to my dreams of being a performer.

At the time, I wasn’t really aware that the issues I was having were related to Crohn’s but it was clear to me that Broadway just wasn’t the place for me.  I moved back home and enrolled in a pre-health sciences program to keep me occupied, and got a part-time job at Le Château. I was still having issues with my health, I was declining but in denial, and continued to ignore my disease as best I could.  By this time I had also developed some unhealthy habits; I liked to party with my friends, stay up late and sleep all day, I was overweight and not eating right. I was not helping myself.

I’ve always loved clothes and everything to do with style but working at Le Château convinced me to pursue a career in the fashion industry.  By the end of my one-year in pre-health, I had been accepted into public relations, my third (and favourite) college program. I moved away to Toronto and began my first year in PR and I was loving every minute of it.

My downward spiral started slowly at first.  I was still indulging my unhealthy lifestyle choices, and still pushing myself as hard as I could to be “perfect”.  I was a little more than halfway through my first semester when my medication stopped working, though it would take about two more years for me to really notice and take my health seriously.  All of those painful and debilitating symptoms I had evaded at 16 had now caught up with me. I developed anorexia, lost 125 lbs, I was malnourished, and I was in so much pain I could barely move for days at a time.  I was blacking out regularly, dehydrated and could barely keep anything, even water, down.

I was lucky if I was able to get out of bed to take a shower so, needless to say, it severely impacted my life, not to mention my studies.  By the end of my third semester, I had missed so much school that my GPA plummeted and I was kicked out my program. I was devastated. Fortunately, my school was very understanding and allowed me to return after a semester-long break.

My personal life was not spared during this time either.  When I finally got serious about my health, I had to make some lifestyle changes and lost a surprising amount of friends during this process.  It was really eye-opening how many of my “friends” weren’t really friends of mine at all, a lot of people disappeared when the party-girl did and they could no longer take advantage of my low self-esteem.

What I was not expecting was the number of people who blamed me for being sick.  Upon hearing that I was down for the count some people’s first response was “well she never took care of herself”. Ouch.  Admittedly, some of my past habits certainly did not help my symptoms, but to blame me for having an autoimmune disease, something I honestly have no control over was a low-blow.  “Friends” of mine started to analyze and judge my life, particularly my eating habits. All of this was done behind my back of course.  One “friend” heard I had been put on a medication that was also used during chemotherapy and proceeded to preach about how I didn’t take care of myself because she saw me eating a hamburger one day (the first thing I had eaten after not eating at all for three days).  My biological father actually told me, the day he found out I had Crohn’s, that it was because I “eat too many Mr. Noodles”. I would like to point out that what you eat does NOT cause autoimmune diseases. I’m no expert but I’m 99.99% sure that if Mr. Noodles and hamburgers caused autoimmune diseases we would have heard about some serious lawsuits by now, just sayin’.  I also wasn’t really eating, drinking or doing anything that many other people (including all of these critics) weren’t, so it was baffling that, rather than be compassionate and understanding, many chose to judge me and find reasons why I “deserve” to be sick.

Then there are the wannabe doctors.  Oh, my God. I didn’t realize there were so many “experts” out there!  These people mean well, I know they do. I always respond with a smile and a thank you, but the number of people who try to “help” by preaching and doling out unsolicited advice is infuriating.  If one more person tells me that I “need” to go gluten-free I am going to scream. I spent $60 (that I really don’t have, I am a broke student y’all) on a health and healing candle from a Voudon priestess in New Orleans that I found on Instagram.  Do you really think I haven’t tried going gluten-free?!?! Honestly. I have tried cutting out pretty much every allergen you can think of; I’ve tried vegan diets, paleo diets, low-fat, low-carb, all of the diets really; juice cleanses, soup cleanses, fasting; I’ve gone to more specialists than I can count; tests, infusions, so many needles and pills you would think I was some kind of experiment.  I even saw a holistic doctor who had me take 32 supplements a day while drinking 4 lbs of juiced carrots DAILY. And for the love of God PLEASE stop telling me to “just pray”, “be positive” or “just be grateful you’re not dying”.  It’s really not helpful and some days were so hard that I would actually pray that I would go to sleep and not wake up.  So telling me to be grateful I’m not dying is just rude and inconsiderate. Just believe me when I say that I really am doing everything I can to get better.

The year I got kicked out of school and lost my friends, I also lost my grandmother.  I was really close to her; she helped raise me and between her and my mom they pretty much made me the woman that I am today.  She took a piece of me with her the day she died. My dog, Puddles, who I’d had for 18 years also died that year and my “best friend” decided to stop talking to me altogether out of the blue.  He was someone I’d shared a lot with so that was really unexpected and felt like a punch in the gut. My life was falling apart. It was a lot to handle and I sank into depression and anxiety.

I was at rock bottom, but it wasn’t all bad.  The thing about rock bottom is that there’s nowhere to go but up.  I definitely had a few pity parties for myself but, eventually, I decided to make the most of this experience.  I wanted to try my best to “bloom where I am planted”. I did a lot of research (and still do!) and overhauled my lifestyle. I eat as healthy as possible with my dietary limitations and I exercise regularly whenever I am able to.  I also started meditating and practicing yoga, as well as seeing a therapist. I started reading and writing daily again, an outlet I’ve loved since I was younger but neglected when I started losing myself.

Of course, there is absolutely no way I would have gotten through any of this without my rock-solid support system.  I am truly so blessed. My mom and my step-dad are so amazing and work so incredibly hard to support me in any and every way that they can.  The friends that didn’t abandon me in my time of need, my real-life Earth angels, have stuck by me through all of the tough shit. They’ve never judged me or made me feel like a bad person for making mistakes.  They brought me soup, tea and meds when I was sick and in pain. They would come and sit with me when I couldn’t get out of bed, watch movies with me and let me cry on their shoulders.  Most importantly, they never failed to lift me up when I was down and keep my spirit strong. 

These days my outlook on life is much brighter.  I still have some hurdles to overcome with my health, mental and physical.  Until a cure is found this is something I’ll be dealing with for my whole life, but I’m hopeful for a loooong remission soon!  I am thisclose to finishing my program in public relations. I was forced to take another break when a new medication failed to produce any results, but I am determined to achieve my goals.  I have found a new specialist and medication and both seem promising. I’m always researching and continue to tweak my lifestyle in an effort to find the right balance for me. I do not miss the parties at all.  I have since filled the hours I would spend sleeping off a hangover with books/magazines, DIYs and art projects, YouTube videos, writing and shopping excursions with my mom. My love of style has given me the perfect outlet to keep my sanity.  This journey has not been easy but I’ve learned so much about myself and life. Every heartbreak and challenge has been a blessing in disguise.  These have been life-changing lessons that I will never forget, and only fuel my drive to do better, be better and to always appreciate everything the world has to teach me. 

xo,

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