The Bright Side – Ways Chronic Illness Has Changed Me for the Better

The positive side of Crohn’s disease is often very hard to see. But I promise you that there is one.

While I never enjoy being in pain, as a young women who has recently entered graduate school, I have noticed ways that my illness has encouraged me to change for the better.

Organization

Someone may not recognize this when walking into my bedroom, but when it comes to school, I am the person who actually rewrites their notes after class. I am the girl with the colour-coded calendar, the one to ask when something is due. My computer folders go more than 5 levels deep.

I have to count on my over-organization to save me on the days when I have no brain. When my stomach is killing me, the worst feeling is the world is being unable to find the bottle of pain killers that actually sort of work. I’ve always been a detail-oriented person that studies hard, but these ‘extra’ organizational skills allow me to compensate for the mistakes I make or tasks I simply can’t accomplish on days I’m unable to walk and stuck in bed.

One moment is great and the next I’m rushing to emerge. Having a chronic illness really forces you to be thoughtful about not just what the next day looks like, but what the next week looks like. That way, if you have a bad day, you don’t screw yourself over. As tiring as it can be, there is no procrastination allowed when you don’t know what the next moment holds.

Adaptability

I carry around an “emergency” kit with writing that states ‘super powers inside’ written on it. This allows me to adapt the best that I can to whatever my day could throw at me. If I need to stay a little longer than I thought, I have food I need. More walking than I expected? I have a heating pad in my bag. Flexibility is key when planning my day or my week.

I have also learned some odd but effective strategies to get work done when its an off day. For example) sometimes I switch the color of pen every sentence. This makes my notes look like an oddly highlighted rainbow – but it keeps me engaged. Sometimes I have to work in front of the TV to stay awake. Its not the most efficient way to work, but its better than nothing. And sometimes you just have to get through. You might do one assignment in an hour one week, but it might take you several the next week. Allowing your brain, and your body, to work at its own pace is undervalued. This is something I’m still working on.

Understanding

I pretty much have two modes: on and off. And when I am “on,” I sometimes expect everyone to work at the same pace I do, which is not only unrealistic but un-compassionate. I am getting better at remembering that it may be my “on” day and someone else’s “off” day. And when someone is having an off day, I want to be there for them.

However, I don’t like when objects take up any more of my limited energy supply. When I am exhausted and hurting and my printer decides not to work, I have a tendency to blow up. Similarly, I used to get frustrated by my own mistakes very easily, assuming I should just work harder. However, chronic conditions make you susceptible to all sorts of different errors, mistakes or inefficient processing. Both the printer and I are trying our best, and I am realizing now that best might be different depending on the day.

 

Now I recognize that for many individuals, chronic conditions do not offer any positives. But I urge you to consider the positive changes that result from your health challenges. Maybe you have cut off toxic relationships that were too much work. Maybe you have made a new connection that you never would have been before. Maybe you inspired or advised another person on how to handle the challenges of their situation. While it may not fix the underlying condition, it can’t hurt and hey – it might even help.

What A Night Out Consists Of For A University Student With Crohn’s

Going to Western University, it’s been somewhat of a challenge to act like the ‘normal Western student’ as others would say. There is a bar event you can attend every single night of the week. Now I believe you need a good night out every once in a while to remain sane but living with Crohn’s, the process of going out no longer just consists of figuring out how I’m going to do my hair or what I’m going to wear or if I can borrow my roommates black booties for like the 5th time in a row. It’s not that those things aren’t important… It’s just no longer a “look good – feel good” type of thing.

In fact, it’s not just going to the bar that causes me stress – it’s restaurants and other events too.

Where are we going?

What food is being served?

Will I even be able to eat it?

Should I eat before I go so that I don’t starve?

*Mental note: spot the nearest bathroom the minute you arrive

What am I going to wear? The jeans I bought two weeks ago no longer fit.

Painkillers? Where are my painkillers? I’ll need them tomorrow!

Where did I put my medical bracelet again?

Is my phone charged?

Ugh, is this even a good idea?

Do I really feel well enough for this?

Maybe I just shouldn’t go?

 

But I can’t “act my age”.

20 Things I’ve Learned From Living With A Chronic Illness Before I Turned 20

But I Can’t “Act My Age”

As funny as it sounds, being ill is a lot of responsibility! I used to be somewhat carefree but now everything I do seems to involve a lot of serious decision making. From going out with friends, to working out, to eating – there isn’t a time I’m not solely responsible for my health.

I feel like I’ll never again have a carefree life.

With St. Patrick’s Day just passing, I find that I envy other people my age. To me, being in your 20s should be a time to run wild and make mistakes and for most people it is. They can go out whenever they see fit, drink as much as they like and eat that damn burger at the end of the night. Now it’s not that I envy drunken nights and eating nutritionally empty foods, but rather the jealousy I have from no longer having those same freedoms.

I miss being able to make plans on a whim to hit the bar with my best friend, knowing that if I get a little too tipsy it doesn’t matter. I can’t completely relax when I have a few drinks because I’m mentally calculating the sugar or gluten content of the drink I’ve just ordered. When I’m dancing (usually in a laughable fashion for bystanders), in the back of my mind is the constant reminder that my body will ache for weeks because of this.

I find myself trying to stay positive and remind myself of how this has changed me in positive ways but I’m just so sick of having to make every decision a conscious one, and at my weakest, I’m just so sick of being sick.

20 Things I’ve Learned From Living With A Chronic Illness Before I Turned 20

How Giving Back Has Kept Me Going

What A Night Out Consists Of For A University Student With Crohn’s

20 Things I’ve Learned From Living With A Chronic Illness Before I Turned 20

I just finished up meal prep for the rest of the week! It consisted of putting some carrots in a blender to add some extra flavour to my chicken broth. Although I’m on a liquid diet for the next couple of weeks because anything else feels like acid running through my body or makes me sick – I shouldn’t complain, it was the easiest meal prep I have ever done! But the puree carrots did remind me of working at the local nursing home…

I’m young! I’ve been here for two short decades and I can say I’ve dealt with more health-wise than the average person my age.

So what are 20 things I learned about chronic illness before I turned 20?

1. It is not my fault. 

For a while this was hard for me to understand. I’ve always been health-conscious and I was always wondering what I did wrong… or even worse, what I did to deserve this. This is something far beyond whether I had drank too much pop as a kid or cracked my knuckles too often (which I didn’t). I did not choose this, but it doesn’t mean I don’t appreciate the life I’ve been given.

2. No, there isn’t a cure. But that doesn’t mean give up. 

Hearing that there is no cure, that you’ll be living with it for the rest of your life, and that the disease has the potential to be fatal is pretty devastating. You must have a good mindset. I like to think of it as: There is currently no cure therefore I must support further research. You could live with it for the rest of your life OR you could do everything in your power to work towards remission and continue to fight. The disease has the potential to kill you. Yes, but I won’t let it. 

3. Life will be different. Don’t worry, it’s not over. 

This did take it’s toll on me for a while. I’ve had to seriously think about what I want in life – from adjusting my plans on the weekend to adjusting my career plan for after university. At times this has been really difficult… Missing out on fun plans with friends and realizing your dream job could potentially remain a dream for a while longer. But I’ve always reminded myself that it all hasn’t been bad. I’ve met so many wonderful people, learned so many new things and have had so many unique experiences all due to my diagnosis.

4. I am not alone. You are not alone. 

Surround yourself with people going through the same thing, surround yourself with people that aren’t going through the same thing but love you. They want to help in anyway they can.

5. It’s okay to be sad and have hard days. 

6. Be upfront. 

People can’t be supportive, understanding or compassionate if they don’t know what you’re going through. You need to take time to educate the people that you’re constantly around about your illness so they can be there for you when needed.

7. Listen to your body.

I’ve learned to remember how I feel when I’m at my best and at my worst. That way when somethings up I’m able to make decisions based on where I’m at on my scale.

8. The power of “no”. 

I can say no. We all can. No, I can’t accept that lunch invitation or stay two hours after my lecture to wait and work on a group project or go for a walk that day. I’ve had to learn that if something feels like too much, it is perfectly okay to just say no.

9. I don’t need to justify why I’m saying no. 

You don’t always owe someone an explanation. Whether you don’t want to do something or you can’t because of your disease, whether its your best friend or a complete stranger you have every right to say no without going into detail.

10. You must be your own advocate.

This isn’t because your doctors and other members of your medical team aren’t good people. You just need to research everything, twice, maybe even three times. Ultimately, the decision is yours. So you need to make sure you’re making the best decision for you.

11. It can be a full time job. 

Not kidding. I have been to three medical appointments in less than 24 hours before. In fact, I’m doing it again between today and tomorrow. If I were to show you my calendar your jaw would probably drop at the amount of time I spend in the hospital, doctor’s offices, picking up prescriptions, getting transfusions, blood tests etc.

12. Some will be inspired by you and others may feel too sad to be around you.

13. You will have haters. 

The ones that don’t listen and don’t want to hear it. Whether it’s because you got an extension on that paper, can’t make a group meeting, don’t want to go out… you will have them! *Sigh* Send donations in their honour to your favourite chronic illness charity.

14. Never judge.

Everyone is fighting a battle of their own. Be kind.

15. Have a “someone”.

I’m so unbelievably lucky to have a few (you know who you are). They’re always doing research about your illness and wanting to learn more. They’re your open ear and your shoulder to cry on at any given moment. They encourage you to do what you can. They love you no matter what. You need them. People you can be real with. The ones you can let in, lean on, be brutally honest with, mourn and celebrate with, live through this with.

16. Treat yo’ self!

Get out of bed? Ace a test? Smile? Celebrate the victories whether big or small.

17. Self-care is non-negotiable. 

I was in denial about the fact that I had an illness that needed to be acknowledged. “You cannot pour from an empty cup” is a quote I remind myself of. There are times when you must come first. Self-care is different for everyone but to me this means eating healthy, not overworking myself, thinking positively, and getting my nails done every once in awhile. Overall, you must work towards making small changes to better your quality of life.

18. There is always a light at the end of a tunnel.

Always. Keep going.

19. Everyone’s experience is different. 

This happens a lot with Crohn’s. You can have the same disease yet have completely different symptoms. I’ve come across people who think it’s some sort of competition. Don’t let them drag you down. They are both hard. They’re different and cannot accurately be compared. Be respectful.

20. You are not your illness. 

You are you. You are great. You are so much more. Don’t let it define you.

How Giving Back Has Kept Me Going

The night was like any other. I washed my face, I brushed my teeth, I texted my goodnights, I turned on my heating pad hoping it would help with my abdominal pain and I went to bed. But then 12:30am hit and I had been woken up due to what felt like a continuous stabbing sensation in my right abdomen – now this had happened once or twice before but after over two hours of it I knew it was time to call my mom. The wonderful women that she is, within 15 minutes of my conversation on the phone with her  she was in the car and on route to London (it really wasn’t much of a conversation, it consisted of me sobbing and her trying to comprehend what I was saying).

Once she arrived, we made it to emerge and I was admitted to the hospital around 6:30 that morning. What followed was one of the worst weeks of my life – I really do not feel the need to relive the series of events but it did change me and I couldn’t have done it without the support of my family close by. Prior to my hospital visit, I was already so fed up with the reality I was forced to live and this was just the icing on the cake. I realized it was time to make a choice: I could give up or give back. I could let the pain overtake me and let exhaustion silence me or I could fight back and possibly help others along the way.

I’ve learned how important it is to have loved ones close by in times of need. Although I was 19, I was entirely helpless. Simple tasks like raising a fork to your mouth to eat were so exhausting that they couldn’t be completed without needing an hour long nap afterwards and I don’t know what I would have done if my parents and boyfriend weren’t there to give me constant support.

On the fourth night of my hospital stay, one with about two hours of sleep I made the choice that when I felt like my health was somewhat under control I would give back. I’ve recently become a volunteer at the Ronald McDonald House. A charity I believe very strongly in – I’m considered an adult yet when I have a sick day all I want is my mom. (I mean, don’t we all?) I couldn’t imagine going through what these sick children do. The House’s vision is “to create, find and support programs that directly improve the health and well-being of children and their families” while they strive towards a world where all children have access to medical care, and their families are supported and actively involved in their children’s care. In London, we embrace the idea of a ‘home-away-from-home’. The house is lucky to be only 165 steps away from the Children’s Hospital, which allows parents to be there for their sick child while they get the care they need.

Through this experience, I’ve met families and children with stories far beyond mine and with hearts beyond their ages.

For parents, it’s the promise of being close to their children in times of need. It’s the promise that they can run down for a coffee when they need a break or a hot shower to clear their head. It’s the promise of assurance and reassurance and it’s the promise of understanding and companionship. It’s the promise that when everything does not go as planned, they are not alone.

For me, it’s the promise of a reason to get through every bad day and appreciate every good day. The promise of a reason to persevere and the promise of knowing that love and support are profound gifts – to give and to receive. I always thought that giving back would consist of strictly helping others but it has helped me more than I could have ever anticipated.

Who knew that simple tasks like prepping rooms, greeting guests, handing out coffee, making others feel comfortable and ‘at home’ in their time of need, something similar to what I had previously experienced, could give me more restoration and relief than any medication could offer.

My illness has altered and taken away certain aspects of my life but they will never take away my drive, love and ability to give back. So as long as another child is forced to fight a battle they shouldn’t have, I will be there. Through this past year and a half of being chronically ill, I’ve learned many lessons. But I’m beginning to realize the greatest lesson I could learn is within myself – through the power of love and two open arms.

Want to learn more? Ronald McDonald House Charities

Interested in giving? Day of Change – Gratitude

5 Holiday Wishes

The holiday season is a busy time for everyone – and finding the perfect gift for someone you love can be difficult. 

So to make it easier for my friends, here are some things someone with an invisible illness like me may be wishing for. The best part about this? None of it will cost you a dime! 

1. Understanding 

Especially when I have to cancel plans. I promise I don’t use my illness as an excuse. You’ll have to trust that I know my limitations and I want you to know that I’d most likely much rather be able to stick to our original plan. 

2. Stop giving us a hard time about our illness

Yes, I know we all use humour to cope, at least I do. I know understanding an unseen illness is difficult  but for our sake please try. We can occasionally pick on ourselves with certain aspects of our diagnosis but when it’s constant and coming from others it gets old (especially the bathroom jokes and the ‘wait, you can actually eat that?!’). 

3. Please take our illness seriously and take the time to learn about it (if you’re reading this I know that you are, so thank you!) 

“How’s that stomach thing?” Belittling an illness doesn’t make it any less real. We’ve all done this to someone – if you can’t see it or you’re not going through it, it’s likely that you don’t fully appreciate all aspects of the illness. 

We’re usually trying our best to shove our illness to the side for the time being, so just respect that we care enough to shield you from the majority of it. Reciprocating with thoughtful questions and intelligent conversation rather than uneducated mumbling means so much. 

4. Graciousness 

In general, as a human – it’s not that hard. 

Specific to my case, if I kindly decline your delicious looking food or turn the cold shoulder the second time you offer me a drink please understand that I really do want to eat that dumpling and I really do want to enjoy another glass of wine with you. But I can’t. Gluten content matters, lactose content matters, sugar content matters. And sleep matters the most. So when I seem like a downer sitting in the corner of the room trying to carry on conversation just know that I want to be there but at that point I’m struggling to be and I need to go home and recover. Rather than pressuring me to stay, help me grab my coat. Don’t tell me things are okay because at that moment they are not – but they will be when I get rest. 

5. Love 

It is the holidays, right? 

Love me the way that I am in that moment. This might get better or easier – it might not. No one gave me a choice and I believe I’m doing a great job coping and taking it day by day as it hits me. 

You absolutely do not have to walk this road with me – but if you choose to please do it with love. I don’t need a kick in the ass to get over it or your tough love. Just love me, care for me, cherish me and I promise to do the same in return. 

Don’t Judge A Book By It’s Cover

Today my boyfriend and I went on a nice, romantic date to my treatment clinic.  

Since my hospitalization in April, I have been receiving Remicade (also known as Infliximab) – a type of chemotherapy and biotherapy drug. After a long run of trying different medications to manage my symptoms and pain, this treatment course was one of the better options. It allows me to function as close to normal as possible (on most days). But it has still left me with nausea, abdominal pain, migraines and muscle and joint pain that inhibits me from walking and makes me feel like a 90 year old (no offence Grandma, love you).

Now I like to look at things in a positive way – considering the circumstances in my life like trying to complete an undergraduate degree in a competitive program as well as volunteering and trying to live my life like a normal 20 year old would want to, this is the best short-term option for me. I say short-term because although some of my symptoms have cleared, the side effects that I deal with on a daily basis are harsh.

I receive treatment monthly via. intravenous infusion (IV) over the course of two hours.  Currently, I’m sitting in London patiently awaiting the clock to strike 3:15pm so that I can no longer feel faint and short of breath. After this I’ll put on a mask because my immune system will be close to depleted and I’ll get a ride back home and spend most of the day laying on the couch with heating pads to help my joint pain and hoping I don’t get sick.

I like to consider myself as one of the lucky ones – and for the ten minutes that I started to feel bad for myself – today’s treatment session altered my feelings.

As I’m typing this, there are 2 paramedics in the room who are here to pick up a woman sitting in the chair directly behind me who has had a reaction to the medication and is now being rushed to emerge. I’ve had scares with medication that have begun to close my throat but I have not had to endure what she currently is.  I have not had to have surgery, I do not have an ileostomy, I’m still in school and I still smile on a daily basis.

But like George Elliot says “don’t judge a book by it’s cover”. 

We all want to be normal – society pressures us this way. But what society does not take into account is the percentage of people that look normal on the outside but their insides have a different agenda. It’s called an invisible illness. The cookie-cutter image of someone who is healthy, smart, somewhat stylish with no detectable problems in their life is what many of us strive to be (and how all of our Instagram pages appear) and many people with invisible illnesses get treated as if all of this were true.

Now, I like to think I have a good head on my shoulders and I take time in the morning to look presentable daily – this is not me telling you to treat me like a baby or as if I’m a potato (although some days I do feel like one) but I do ask everyone to realize that my health is not up to par with yours.

          

Now part of this is my own fault. I smile – LIKE ALL THE TIME… especially when I feel like crying. During my hospitalization, I found out I was allergic to a drug due to receiving it through an IV and shortly being unable to breath, my hemoglobin levels had dropped severely and I received an immediate blood transfusion, my stomach was distended and painful ultrasounds and scopes were done to see what they could do, I got blood taken every other day, I was given a shot for pain that made me sick which resulted in receiving Gravol through an IV to make me sleep it off and overall, it was probably one of the worst weeks of my life. Yet somehow when visitors came – these photos were still able to be snapped. My  doctors told me I had to quit smiling because they were unable to properly assess my pain level. They would’ve sent me home a day earlier than appropriate for my case because of it.

Some days I really do feel 90%, on those days you see me and you’re probably conversing with me.  I’m able to go to all of my lectures, volunteer and go out and see my friends. But the problem is that I can switch from 90% to 20% very quickly – within ten minutes of talking to me I may be too tired to say a word and the pain comes out of nowhere. This is when I ask you to be understanding. When I change my mind about going out, when I no longer want to go for lunch, when I don’t want to talk – this is why and I too, wish it wasn’t happening.

My point is that it shouldn’t take me dropping twenty pounds and losing all of my hair for people to realize that I’m chronically ill and unable to do everything I used to be able too.

 

We’ve all struggled with something in our lives – many of us still are. Many struggle much more than I do in regards to health and I’ve come to realize that I need to ask myself ‘how can I be the healthiest, happiest, most whole version of myself while living with Crohn’s disease?’ I try to align my actions with that question everyday and continue to live the best version of my un-normal life.

We all face hardships. Nobody is immune to that – let’s just all learn to become more aware of what other’s are going through and make the world a tiny bit brighter by doing so.

Normal is overrated anyway! 

“Trust Your Gut”

We’ve all heard this before. I’m guilty of offering up this piece of advice to those who need it and whenever an important decision needs to be made – I often abide by “trust your  gut”.

But how am I supposed to trust my gut when my own body is trying to destroy it? 

Throughout my life, I had fought the common cold; the occasional flu and what the doctors thought that at the age of 13 were just pre-menstrual cramps. But after constant nausea and feeling tired all the time (I’m not joking, I would wake up and ten minutes later need to take a nap) I finally decided that it was time to get answers – or at least a different perspective. It took 6 long months of three doctors collaborating tog
ether through blood work, scans, testing and scopes and finally on October 7th, 2015 (one week after my 19th birthday), I was diagnosed with Crohn’s disease.

I stared blankly at the doctor who announced the news.

I was unsure of what the moment of silence he placed upon me was for. Wait, was I supposed to cry? Get angry? Panic? Leave? At that moment I had absolutely no idea what Crohn’s disease was and how it was going to affect me! I was just happy we finally had an answer for all of the nonsense my body was throwing at me.

Crohn’s disease? Okay… so what’s next? 

I can’t help but laugh at myself when I think about that moment.  How did I stay so calm, cool and collected? Well, simply because I had no idea what the next year of my life would entail. Like many of you – I had no idea what Crohn’s disease was and I had no idea how/why I got it.

After a year and some of being a ‘Crohnnie’ (I don’t really think that’s a thing – but let’s just go with it) I’ve learned a few things (a lot actually). But I learned them simply because my body forced me too.

For those of you who are even the tiniest bit interested in what I’ve endured and will continue to endure – here’s a summed up, somewhat sugar-coated version of what Crohn’s disease is!

Brought to you by the ‘Crohnnie’ herself… 

Throughout university, I’ve come to learn that a body is a body – a physical structure composed of different types of cells that together create tissues and eventually organ systems that ensure homeostasis and viability. In order to do this, it consists of many systems – one being the digestive system. We all have one. Mine is just… what’s the best way to put this? Mine’s just hella pissed off at itself!

  So what lead me to the doctors in the first place?

Well, symptoms of Crohn’s disease differ from person to person which is why diagnosing it can be difficult at times. You can find a full list of the symptoms here: Symptoms of Crohn’s Disease

As I mentioned before, I’ve had miss-school-lay-on-the-bathroom-floor-and-cry-all-day cramps since I was 13 years old. My symptoms consisted of these cramps accompanied by bloating, nausea, reduced appetite, major fatigue, muscle pain and the worst one of them all – extreme blood loss.

What does that lead to?

Well, Crohn’s disease is named after the brilliant man who first described it almost 100 years ago. It’s a chronic, lifelong illness which to this day still has no cure. It falls under the category of an irritable bowel disorder (IBD) and can strike anywhere in the gastrointestinal (GI) tract. It is also considered to be an autoimmune disease. This causes my body to attack and damage it’s own tissues which then leads to all of the symptoms I listed above and more!

My body is attacking itself. It acts as if my healthy cells are an infection that it is fighting to stop. Therefore, it is fighting itself to the point where parts of the bottom of my small intestine and beginning of my large barely exist anymore.

My immune system is overactive like Usain Bolt compared to yours being the camera guy that ran into him. 

In the past, it has been known to be a genetic disease, but my case was different as there is no genetic history of such a thing – luckily, further research and studies are being done to determine other possibilities that jump-start this illness!

Looking back on it, I’ve probably had symptoms of Crohn’s disease since I was 13 years old and just didn’t know it. The doctors didn’t have sufficient reasons to think that I did at the time and it never crossed anybody’s minds once (including mine or my parent’s). Since my diagnosis, I have felt and dealt with things that I never thought I would have to experience at the age of 20… or ever really. Crohn’s disease is becoming more and more prevalent among young adults my age – it is time to become more aware!

For more information about Crohn’s, the testing and diagnosis process, complications and whether you could be at risk – check out: Are You At Risk?

#WhatDoYouDoWhenYouCantTrustYourGut #TrustYourKnee?

For more about my journey with Crohn’s thus far and all that it has forced me to face check out more blog posts to come! My Gut Journey 

Don’t Judge A Book By It’s Cover