Sidelined: a perspective of living with Crohn’s Disease

The youngest of three children is a very empowering position in life, particularly when your two older siblings are remarkable in all factors, as are the parents who raised them. It means that as the youngest, your benchmark is set extremely high, and when you can’t exactly meet the high bar set by those who went before you, you get creative and think of other ways to stand out and shine.

This was the environment that I grew up in, with two fantastically amazing sisters who were incredibly intelligent and uncannily talented in the interests they loved so much (law and music respectively). It made for a terribly competitive environment for me, not pitting me against my sisters, but pitting me with the rest of the world, because I wanted to prove that I was just as amazing and talented as my dear siblings. And it worked very effectively – I pushed myself to achieve the highest of results in my studies, to train hard in exercise so that I could be fit and look good, and, in my unique sibling ‘speciality’ – fashion – I made sure that my style was unique and creative, garnering admiration from those around me. I would never admit it out loud, but I loved being on top of my game. Of course it was no walk in the park, there were the inevitable ups and downs and challenges, but I was quietly proud that I was a high-achiever, something that I never recognized at the time, but upon reflection can now acknowledge.

Then I got sick.

It was my first or second year of university, I can’t recall exactly, but I think I was about 19 when I realized that for the past while, my tummy had been sore – constantly. My clearest memory of this time is standing at the door to the garage, talking to my eldest sister, and saying in veiled desperation that my stomach had been hurting for a month, and, she suggested I go to the doctor. It may seem obvious, but as I mentioned earlier, I was competitive, and I didn’t want to acknowledge one ounce of weakness. I was also so paranoid about being the ‘baby’ and getting things handed to me so easily that I had ignored it. But as the eldest, wisest and most practical of sisters whose views are so respected, I heeded her advice and went to the doctor.

It took many tests, a lot of my own research and many specialists’ visits to be finally diagnosed with Crohn’s Disease. Of course while the process of testing and diagnosing was happening, I was getting worse, experiencing bursts of debilitating stomach cramps where I couldn’t move, cramps so painful that it’s almost impossible to describe them without diminishing just how painful they are actually are. The cramps were also accompanied by the not so pleasant symptoms one might experience when struck down by food poisoning, but on a much larger, prolonged scale. By the time I was diagnosed, I had cancelled last minute for an excess of events and engagements, had fallen dangerously underweight, had worried my parents, family and boyfriend to no end by being so ill, and had unknowingly planted the seed of stress, worry and anxiety that would afflict me for years to come. During this time, I wondered incessantly how I was going to complete all my university work and still get the marks I wanted so I could reach the high standards I had set for myself. Like I said, I didn’t consciously acknowledge it, but being average was not an option for me.

As soon as I was diagnosed, I was hospitalized and placed on an IV drip, unable to eat for a few days and having steroids pumped through my body in an effort to reduce the swelling and tension in my intestines. Food was re-introduced in stages, starting with liquids, then making my way up to solids but nothing fibrous; it’s probably one of the only times a doctor would advise eating white breads, plain pastas and vegetables so boiled they are basically mush! It’s a diet that I have become very familiar with over the years. I left the hospital four or five days later, no longer in excruciating pain, but thoroughly exhausted from the ordeal.

The weeks that followed saw me trying to get back on my feet, understanding what was actually happening to my body and what I had to do to make sure it could function as best it could. I took my steroids religiously, and saw the side effects that came with it – my then-thin face ballooned to a massive ‘moon-face’, I couldn’t for the life of me sleep, my body retained fluid making me feel ‘spongy’ and heavy, and I was hungry, all the time. All of this while still trying to be the best version of myself in everything else in my life, including staying on top of my studies, requesting extensions on assignments, and leaning heavily on my Mum when I was too exhausted – and afraid – to speak to any of the faculty staff. It wouldn’t be the only time that I would have to go through this battle of body and mind.

I have been hospitalized about three times for my Crohn’s disease, once very seriously when they had to remove a perforated appendix and a number of other ‘growths’ from my intestines; another instance when after having broken my foot and requiring an operation, the surgeon told me he wouldn’t operate while on my Crohn’s medication (I blindly took his advice and ended up extremely ill, in pain and all the while with a foot in plaster). I have had quite a number of flare-ups (the attacks of pain and symptoms you get when your Crohn’s is active) and have been on steroids so many times I can’t remember the exact number, having to endure the horrible side effects that come with it. I have to take medication – quite likely for the rest of my life – that suppresses my immune system (but also reduces the chances of experiencing more flare-ups), making me so susceptible to every disease that’s out there, as well as a documented higher risk of bowel cancer. The medication also means I can’t take other anti-inflammatories or certain over-the-counter medication like ibuprofen, so whenever I experience an injury (such as the painful neck and shoulder that’s been hanging around for years) or any other affliction such as the incredibly horrible pain that comes once a month for ladies, I am restricted to paracetamol, which is not the most effective medication to target these ailments.

Largely though my physical health is ok. My flare-ups seem to have subsided over the past two or three years, but by simply having Crohn’s, coupled with the work of the immunosuppressants, I am easily fatigued. Very easily fatigued. You know when you just get over a cold or flu and you head back to work, having been in bed for the past few days, and you feel ok but still pretty damn tired? That’s me, just all the time. And if I do get a cold, flu or other ailment, while it might take most people two or three days to get over the worst of it, it takes my a good week, if not more. There are also certain foods I just cannot stomach, particularly foods really rich in flavor, such as seafood, pate, even the brown meat of chicken and full cream milk. People think I am being fussy, but I just cannot keep the foods down.

The worst thing about living with Crohn’s, however, is the mental and emotional anguish, and that is something that has only just dawned on me. Truthfully, the last 11 years of my life have been ridiculous, because I have never, ever wanted to acknowledge the impact of Crohn’s and its effect on my capabilities and, consequently, my life. I have tried to be so humble in my disease, I have acknowledged countless times just how privileged I am, and that there are people far worse off than I am, in both health and circumstance. I watched my own father graciously and admiringly battle – and beat – cancer, and when you see someone go through that, you think, well medication for the rest of your life, constantly feeling tired, being unable to take the most effective painkillers when you have an ailment, and the occasional flare-up with possible hospitalization ain’t so bad. My middle sister, so maternal and loving, has shared stories of visiting developing countries and doing charity work for small communities, sadly repeating the unimaginable hardships so many young lives have had to endure. Again – when I hear stories like this, I actively acknowledge how grateful and lucky I am that I have a loving support network of my family, boyfriend and friends, and that I have access to education, healthcare, safe environments, and shelter.

The problem with my having this attitude though is that I went too far: I always brushed off my disease like it was nothing. Ignored and dismissed it, that is, until I needed a reason why I wasn’t performing at my top level.

Since graduating from university, and yes I graduated as a top student, I have pretty much had a new job every year, if not every six months. I have pushed myself so hard, trying to be the absolute ‘best’ that I could be, not realizing that I was pushing myself so far beyond what my body could take that I was actually pushing myself backwards. In commencing employment, I never told any of my employers that I had Crohn’s because I always thought it was nothing, that it had zero impact on my job and my performance, and that I could operate at the level where everybody else was working. I thought I was equal to everybody else. What I didn’t realize is that trying to be your best at a demanding job while also trying to achieve optimum fitness, style and sociability is incredibly hard work for the best of people;  trying to do it when you have Crohn’s is pretty much fucking impossible.

Consequently, I have had so many breakdowns, and hastened resignations from jobs, because whenever I was struggling to keep up with the workload, I would tell myself that I just wasn’t good or capable enough. I always played down the fact that perhaps the fatigue associated with Crohn’s, and my compromised immunity, might have had something to do it. I would worry incessantly, wondering how on earth I could keep up, and then worry more that I would be caught out, that I would not only be admonished, but fired for not being up to scratch. I would then usually do one of two things, if not both: First, completely and utterly shut down, unable to get out of bed and face the world. Or second, run (aka resign), because I never wanted to stick around in something that I couldn’t do, and also because I wanted to get in before the other party could do (what I thought would be) the firing. It was generally at this point that I would tell my employer, whoever it was at the time, that I had Crohn’s, and that I needed to leave so that I could focus on my health and get back on track. Or if I was stuck in bed, it was either my worried Mum (in my early 20’s) or my unwavering supportive partner who would have to do the ‘resigning’ for me. Cowardly, I know, but no matter how bad I was feeling, emotionally or physically, I never ever wanted to admit ‘defeat’ to the disease. It was better just to think that I wasn’t good enough to do the job.

Anxiety and depression are acknowledged side-effects of the chronic and temperamental Crohn’s Disease. Being chronic, you have to acknowledge that it’s going to stay with you for the rest of your life, although some patients do fall into remission as they get older and can figure out certain triggers to avoid (although this is not always fail-safe). The temperamental nature of the disease means you never know when your next flare-up is going to strike, nor when you are going to need a bathroom at that very instant. That is hell for someone like me – an avid traveller who would love to do things on impulse – because you need to have an emergency plan, always and without question. It means that what most people might consider as straightforwardly simple, such as staying in hostels, is tricky, as I prefer having a private bathroom for those inevitable uncomfortable moments. (I cannot stress enough how much you rely on bathrooms when you have Crohn’s – I won’t go into gory detail, but I need to emphasize the point so that it is truly understood how uncomfortable, and stressful, Crohn’s can be). There are many far off places that I would love to see, but probably never will, because I need good healthcare on standby. Going through a flare-up is ridiculously painful and draining; experiencing it in a country with a different language and compromised health services is something that I just don’t think I could handle mentally (and quite possibly physically). I know there are people out there who do it, and I have so much respect for them. Don’t get me wrong, I have been to many beautiful places and had many wonderful experiences, it’s just that I have had to spend hours after countless hours researching and finding an insurance agency that will cover me (generally only after having been assessed and then consulted with my gastroenterologist), paying a fortune in travel insurance, and figuring out where the nearest medical centers are in every place I visit as I could very well need them.

The stress of always having to feel prepared and always knowing where the nearest bathroom is, just in case the Crohn’s decides to flare-up and remind you that it’s still there, coupled with my dismissive attitude to just how big a deal Crohn’s is, has been a powerful combination for my own experiences of anxiety and unhappiness. I have not worked for more than a year now, having left my last job to pursue a life in New York, searching for a job/career-path that wouldn’t stress me out and that I could do without fear of not being good enough, and without fear of triggering another flare-up or nervous breakdown. The tentacles of my anxiety have extended far beyond working and fear of flare-ups though, curling themselves around most other areas of my life and making simple tasks, like riding in a car or being in certain large crowds, a scary-as-fuck experience.

This is compounded by my own frustrations at not being able to keep up with everyone around me. I have watched my friends who I went through school and university with, attain great positions and salaries in incredibly admirable and intellectual stimulating jobs, get promoted, buy beautiful houses, have gorgeous babies and basically, be able to support themselves in having a life that I don’t have but was once well on track to achieve. I know that you should never compare yourselves to others, but it’s so fucking hard. I feel like an elite athlete who is used to competing and always considered a frontrunner, sometimes coming first, sometimes not, but always performing well alongside their teammates; now, though, the athlete can only stand on the sidelines, watching as their teammates run further and further away into the distance, and no matter how hard they try, the athlete just can’t get back onto that track.

This feeling has made me completely withdrawn, I avoid seeing people, including my friends, because I don’t want to talk about my non-progressing life. I am honestly extremely proud of all my friends’ achievements, I would never ever wish anything but the best for them as I am a staunch believer in support and collaboration rather than singular competitiveness. But I can’t help but feel envious, and depressed, that my life and achievements do not run parallel to theirs. So I don’t see or communicate with them. It also means that I really struggle to cope in social situations, which has, on occasion, culminated in me drinking beyond my means. In these instances, it’s as if the more I consume, the more I loosen up, alleviating my anxiety and opening me up from my withdrawn state. I am by no means an alcoholic, but I have on a couple of occasions gotten into a state far drunker than I would have liked to have been, simply because I really, really wanted to escape the feelings of inferiority when talking to others. And while most people might wake up the following morning slightly embarrassed but laughing at their antics night before, thanks to my well-flexed anxiety muscle, usually I wake up the next morning (and beyond) crying and terrified about how I behaved in my drunken state, terrified about what others thought of me, and terrified whether or not that ruined my chances of leading the life I want.

It was an anxiety-filled scenario like this that recently forced me to come to terms with the fact that I needed to acknowledge the impact of my Crohn’s. I don’t exactly know how it manifested into the realization that I was far too dismissive of my disease, but I was in bed, crying and decided to Google ‘living with Crohn’s’. I landed on the Crohn’s and Colitis Australia website, an organization that my unbelievably strong and supportive mother had signed me up as a member and kept renewing my membership, even though I kept ignoring all of their communications and information. And as so much of my angst comes from not having a job, and not being able to succeed at it, I decided to download and read the ‘Working with Crohn’s: A Guide for Employees’ information booklet.

There was one key piece of information in this publication that really stuck me: under Australian legislation, Crohn’s Disease fits the definition, and is often considered, a disability in the workplace. The statement was so glaringly clear and powerful that I just couldn’t ignore it anymore. If it’s severe enough to be considered a disability, then I have to acknowledge that having Crohn’s Disease is a bigger deal than I ever thought, or wanted, it to be.

Part of that acknowledgement is writing this, gaining a clearer perspective on what my life has been like and how I have struggled by actively suppressing the fact that I need to make certain amendments to mentally and emotionally live comfortably with Crohn’s. Honestly, it has been so hard, because I have actually suppressed so much of my past, pushed it away, because I have been so unhappy about my lack of progression. Friends will talk about important events like birthdays, and I can’t remember the details because I have blocked out the years, not wanting to revisit and remember how unhappy I was, nor remember what I hadn’t achieved by that stage in my life. And yet when I can remember certain events, I have no idea when they happened, as it’s all in a huge jumble in my mind that I have categorized as ‘the past’. Writing a resume is a ridiculous process; remembering the years when I held certain jobs is tough, but worst of all is trying to list my ‘achievements’, as I actively believe that I had none, particularly as I usually left my jobs so abruptly.

I don’t want sympathy or sentiments of ‘poor you’ from others, I really don’t. Physically, I feel I am managing my Crohn’s well, I am actively getting my fitness and healthy eating back on track after some long-loved travel put a dent in it, and like I said, there are many, many others far worse off then I that need attention and support. I guess I just want people to understand. I want people to understand what it means to have Crohn’s Disease, and how much it has an impact on daily life. Many people, I think, take for granted the little things, and it’s just trying to make people realize that it really is just that little bit harder to do the simple things when you have Crohn’s – even going to work day in and day out can be exhausting. And the most important person that needs to understand this is me.

I have since read many personal stories about people living with Crohn’s Disease and I realize that that the fatigue – the symptom that has probably had the biggest impact on my life – is not unique. Many others have scaled down their hours, or have stayed in their long-term jobs but worked closely with their employer so that any special needs can be accommodated. This is something I have never faced. Rather, in my efforts to be the ‘best’ at what I do, I have entertained, and often pursued different paths, thinking “this is going to be it! The career path and job without any stress and worry!” The latest iteration was that I was going to be a fabulous Fashion Editor in New York City, which isn’t too far a stretch considering how much I love writing, pulling together outfits, photoshoots, imagery, art and general cultural observations, but internally I was completely stressing over how I would be able to keep up in a notoriously demanding, cut-throat and unforgiving industry. Again, this was my competitive streak rearing itself: I thought I had to be the best in my defining interest, and in my mind that meant being nothing less than Anna Wintour’s best employee.

Now, I am thinking that even though I love, love, love fashion, I don’t necessarily have to be right in the thick of it (ie a fashion editor) to achieve my objectives. Of course, I would still like to be actively involved in the industry, but I realize that my career goals now revolve around finding a job that’s not physically demanding, doesn’t take an emotional toll, is intellectually stimulating, and where my employer knows that I have Crohn’s, is supportive and can offer flexibility in my working conditions (the ability to work some days from home if needed would be a god-send). Of course, it’s a long list of demands, but I now know that I need these things in order to produce my best work, and to achieve my overarching goal: to be the best I possibly can be – Crohn’s and all –  in whatever I do.

It’s been a long, fucking hard road, but I believe that I have only just now turned a corner. Sure, there is going to be a lot more shit to come (figuratively and literally – sorry had to get one pun in there!), but if I can at least look forward and know that I have to work with my Crohn’s, rather than ignore or fight against it, then I think it’s going to be a lot easier than I have ever let it be before. As many others have said, it’s not about letting the disease define you, but it is so important to acknowledge that it is a part of, and will impact, your life. Sure, it’s taken eleven years, but I think I am finally ready to step back onto that track.

Thank you to my Mum and Dad, my sisters and their husbands, my beautiful nieces and nephews (including the ones to come) and Notty for all of the support and love that you have given, and will always give, me. You are probably the only ones who have witnessed first-hand and know how hard it has been for me (even if I didn’t know it!), and I am forever grateful for all that you have done for me. Love you to pieces (and Notty, there you! xx) xox