Living and working with a chronic illness… I’m not completely sure where to begin.

I’ve been writing this post in all forms – whether it be through my journal, through my prayers, through a conversation with a friend – over the last 15 years.  I’ll probably never stop writing it, forever evolving through different different seasons, challenges and reprieves.

First, some context:  I have ulcerative colitis. It’s an uncomfortable, “don’t talk about it at the dinner table” kind of disease.  Essentially, it’s to do with the inflammation of the large intestine and it can make life quite stressful and unpredictable.  It comes and goes seemingly at will.  When I’m healthy, I feel completely normal.  When I’m not, I feel awful.  I’m in pain, I’m tired, I’m anxious.  I’m dreading the night and the mornings when it tends to be the worst.  I’m nervous about what I eat.  I feel like I should move into the bathroom.

I was diagnosed in my first year of university.  It came on with a force that took me completely by surprise.  I was living in residence, meeting great people, continually learning, and absolutely loving my time.  So colitis was a shock, to say the least.  I can tell you the exact date I started experiencing symptoms (9th November, 2008, in case you’re one for details).  Like I said, it came on quickly.  After a multitude of tests, I was diagnosed in December, sent away with the hope of symptom relief through my new meds.

The diagnosis

I really thought the medication would work. I thought it would take a week or two, but would be able to get on with normal life. I hadn’t considered the impact and scale of what this was.  Back at university, I was meeting with a manager of the dining hall to talk about my food options.  She had a sister who had colitis and her ‘encouragement’ to me was, ‘All I can say is that it isn’t cancer’.  I looked at her with horror.  Of course it’s not cancer.  I would never have put those two words in the same sentence.  I hadn’t even conceived of it being anything close to that realm of severity.  I had colitis.  I would deal with it.  Medications would work. It was all going to be fine.

I’ve thought back to the truth of those words quite a few times over the years.

Thankfully, it’s NOT cancer.  Truly, the two are incomparable. But it does have a difficult and pervasive impactive on my life. More than I ever thought at the time.

As the medication wasn’t working and I was too stubborn to go on drugs with more potential side effects, (‘future me’ says to ‘past me’: ‘bad call’), I started seeing other health care professionals.  I went to a nutritionist and a naturopath.  I took every allergy test and tried every diet – every low-FODMAP, gluten-free, sugar-free, fun-free diet you can think of.  I went to a specialist in Eastern medicine who stared at my tongue for a really long time and recommended 37 (zillion) supplements from unmarked bottles.  I went to an acupuncturist.  I was reading every article and book on the subject, willing to give nearly anything a try.

The flare continued and I found a way to deal with it.  As anyone in this state will know, I walked around with a radar for where the nearest bathroom is, always situating myself accordingly.  I started to develop a sense of when I was going to be ok and when I needed to take it easy.  Months went on.  Gradually and without a clear explanation, the flare began to ease, lessening into a liveable reality.

Adjusting to life with colitis

I tend to be a stubborn person (…slight understatement) and I refuse to let colitis define or control me. Now and then, I’ve had to succumb on the latter. Sometimes, it changes your plans.  It stops you from what you want to do.  But ultimately, I never want to be defined by this disease. A lot of physical and mental energy has been spent on this goal.  I work hard to ‘be ok’, maybe more accurately to ‘seem ok’ when I need to.  

Colitis is an invisible disease which I’ve found to be both a blessing and a curse.  Sometimes, I need to get through an event, a meeting, a car ride, anything – without wanting to raise attention.  I don’t want special treatment and I’m grateful that it can generally fly under the radar.  I also don’t look sick.  There’s no external giveaway that I have colitis. 

On the other hand, its invisibility can make it a lonely road.  It’s not the first thing people think about.  They may forget to ask how I’m doing.  It may cause them to underestimate its toll or impact.  Most of the time, I’m perfectly fine with this.  It’s preferable, even.  But when the road gets particularly hard, when I’m completely fed up with it and I just need some support, it can feel lonely.  Despite the most loving and supportive people around me, colitis remains a solo journey.  

There have been ups and downs over the years.  I had a great multi-year phase where I was completely flare-free.  Over the last three years or so, it has been pretty volatile.  There have been quite a few hospital visits, several changes in medications, (from monthly infusions to at-home injections), bouts of steroids and frankly, a lot of frustration and tears.  While I’ve learned a lot about self-advocacy, through it all, my medical team has been wonderful. I’m incredibly thankful for the healthcare that I’ve had in both Canada and the UK.

Working with colitis

Working with a chronic illness also has its ups and downs.  When I’m healthy, it doesn’t even factor in and it’s the farthest thing from my mind.  But if I’m in a flare, it’s really hard to escape.  The body uses every bit of its energy in fighting, so I’m always tired. To exacerbate the situation, symptoms spike at night so I lose out on sleep. It also comes with abdominal pain, general discomfort and canker sores, on top of the usual digestive symptoms.

What gets me every time is the emotional toll. A flare takes so much endurance – a marathon you have no choice but to run. When you add work pressure on top of it, it’s completely overwhelming. Despite expectations (from others and from myself), there are times when you just don’t feel like you have anything to give.  Physical health is such a basic need.  If it’s not being met, it’s hard to then have the capacity to perform at the level I want to.  It takes so much grit, a lot of perseverance and more self-love than you think you need.  The last one is probably the hardest.  I’ve had to accept that there are some days I just can’t do it.  Some days, colitis gets the better of me.  I’ve had to accept that and give myself some grace in the process.

This is a video that I recorded last Spring, initially for an Instagram story, but never ended up posting. I was in the middle of an intense flare at the time, feeling completely and totally drained. It all feels a little raw – I went back and forth on including this in the post – but I hope it gives some context to the experience.

Some people have asked why I’ve started working for myself when I have a chronic illness, forgoing paid sick leave or job security.  There’s certainly a risk in that, but ultimately, I find it freeing.  I really hated having to ask for allowances or understanding, ready as managers were to give it. I don’t have to ask permission to go to a doctor’s appointment.  The bathroom is just down the hall.  When going to yet another appointment, I don’t have to do the ‘will have my computer with me’ and ‘will work whenever I can’ song and dance.  Let’s be clear – I’ve only had wonderful managers in this regard.  They have all been understanding.  From understanding nods when I have to leave a meeting or crying over a coffee about the medication that didn’t work, I’ve had managers who are beautifully caring and empathetic. To each and every one – thank you.  It truly means so much.

My two cents

I started out writing this thinking that I could make it a guide – ‘here’s what I’ve learned and how I can help you’.  I scrapped that pretty early on.  Frankly, I have no answers.  I’m still figuring it out as I go. I also acknowledge that there are so many forms of chronic illness, both physical and mental, which all look and feel so different. Everyone’s experience is unique.

It’s my hope that this post gives some understanding to what a chronic illness can look like. I hope it gives some context to what many people go through. If chronic illness is something you deal with, know that I’m here for you. If you have questions or want to chat, let me know!  I love giving both opinions and hugs, so I’m here for whatever you need!