Hardships often prepare ordinary people for an extraordinary destiny.
It’s funny, really, how unpredictable life is… We all would like to think that life is simple… care-free… easy.. And that beyond the awkwardness that is, being a teenager, there is a glorious land of adulthood that is filled with unending happiness and great success! but the somewhat unfortunate reality is that, oftentimes, our life is much the opposite.
I’m not saying that everything about life is dull and dreary. There are so many beautiful aspects to this life. So many things, that I am deeply thankful for. Family and friends, love, spontaneous adventures, even growing up is beautiful in its own way…
But, with the good, we will often face some bad along the way… an untimely death… a broken heart… an illness… For our little family of two, it’s the latter.
What I want to share with you today, is my personal battle of emotions and anxiety, that often come with living life with a spouse who has a chronic illness.
In 2008, right around the time I first met him, my sweet husband received news that would forever change his life. He was diagnosed with Crohn’s disease.
For those who have never heard of Crohn’s before, here is a brief history of what is known.
The general definition of Crohn’s disease is this:
A chronic inflammatory disease of the intestines, especially the colon and ileum, associated with ulcers and fistulae.
- fever and fatigue
- abdominal pain and cramping
- blood in the stool
- mouth sores
- reduced appetite and weight loss
- perianal disease
- inflammation of the skin, eyes and joints
- inflammation of the liver or bile ducts
- delayed growth and development in children
A bit more info…
Taken from crohnsandcolitis.ca
Crohn’s can affect anywhere in the GI tract. i.e. anyway from the mouth to the anus, but is usually located in the lower part of the small bowel and the upper end of the colon…. it is a chronic life-long illness…. People who have Crohn’s will experience periods of acute flare-ups, when they’re symptoms are active, and other times where there symptoms go into remission……There is no cure for Crohn’s – yet.
Now that you have a better understand of this disease, Here is a little glimpse into my heart. A small tidbit of internal struggle I face,
Where It All Began…
To be honest, before I had met Dylan, I had never heard of Crohn’s, and even after we started dating, I still wasn’t sure what to expect from it, because it’s one of those illnesses, where you can’t really tell from the outside that the individual is sick. but, I learned very quickly after we started dating, just how serious this disease is.
3 months after we started dating, in 2013. I had been away, visiting family, and was on my way back home, when Dylan texted me to tell me that he was going to the hospital (which had never happened since he was diagnosed 5 years earlier). He told me not to worry, that the doctors would give him some steroids and he would be fine. So I only panicked a little, not really sure what to feel. That same night, he came over for dinner, but, to the unknowing eye, he looked fine; A little uncomfortable, but otherwise fine. We went to youth group that night, and he started looking more sick. I remember playing a game with the kids, and afterwards coming into the kitchen to find him curled up on the floor because he was in so much pain. I knew then, that something was very wrong, but I tried not to worry, because he said he just needed to go home and sleep. One of the leaders drove him home, and I stayed till the end of youth group and tried to not let myself panic. But then, at the end of the night, I checked my phone, and his sister texted me, she told me that he was taken to the hospital again, and that he would be staying there for the foreseeable future.
That’s when the full-blown panic mode set in. I went home that night because I had no way of getting to the hospital, and I wasn’t sure if I should tell anyone about what had happened. It was one of the most unbearable nights of my life. I didn’t know how Dylan was doing, I didn’t even fully understand what was wrong, I couldn’t talk to him. It was awful.
The next day, I told my parents what had happened, and they drove me to the hospital to see Dylan. I remember it all very clearly… rushing through the ER… seeing him in a hospital bed… everything. I don’t remember ever feeling so scared. This was definitely not something that I ever thought I would face in my life.
Dylan ended up being in the hospital for 13 days. The doctors told him that he had a very severe Crohn’s flare, that his disease had gotten worse, and his body had essentially poisoned itself, and that truthfully he was lucky to be alive. They said that looking back, he had probably been sick for months, and that he would need several months to fully recover..
Since 2013, Dylan’s health has been mostly stable, which I’m so very thankful for! Though he’s had two flares since then, but nothing as bad as his first one. But it is still an ongoing struggle to make sure he stays healthy. from medications, to getting enough sleep, to eating the right food. Our life, in many ways, revolves around this disease.
And that’s where I am struggling. I am so happy to be Dylan’s wife. I love taking care of him, I love doting on him and making him happy. I love spending my life with him! But it can be hard, and sometimes overwhelming. Often I find myself a little anxious about when our life will be turned upside-down again because of Crohn’s.
If I’m being honest, my issues with fear and anxiety started when Dylan was hospitalized. I’m not saying it’s his fault. It’s not. It is simply who I am, and it comes with the territory of being with someone who has an unpredictable illness and also comes with loving someone. You care about them, and therefore, you worry. There is seldom a day that goes by that I don’t wonder if he is actually OK. If he was being honest about how he’s feeling, or if he’s pushing himself too hard at work… I always wonder… I’m fairly certain that I always will.
I find myself anxious about the food that he eats. I know that there are certain things he really shouldn’t have… apples… popcorn… lettuce… but, in the back of my mind, when I make something new for dinner, I’m praying that it doesn’t hurt him, that I’m not the reason that he gets sick the next time…
I’m anxious about his medication. A few months ago, Dylan had a mild flare, and his doctor put him on a very strong medication, one which had cancer as one of the side effects.. The first week he took it, I cried. I cried, because he already had an incurable disease, and now he was at risk for another. I worried every time he took it… wondered if the next pill he took would give him cancer…
I’m anxious about him getting sick again (having a flare) because the reality of Crohn’s, is that he will get sick again.
It seems that life, for me, has become a constant cycle of being anxious and worrying…
But, despite my life being a whirlwind of emotions, my real battle lies in finding the peace and strength to get through each day. My real struggle, is trusting that God knows what’s best for our life, and that He will provide for every need that we have, emotionally, spiritually, physically…
I know that I painted a bit of a dark picture of what my life looks like, but I’m just being honest. There are days when I’m totally fine. I have a positive outlook on life and I know that God is in control. But, there are also many days when it is hard to even crawl out of bed in the morning. Days, when I feel very distant from God…
What I’ve Learned
I’ve learned a lot, over the past 3 years, about how harsh life can be. About how difficult it can be to stay strong, how tiring it is to “put on a brave face”, how painful it is to feel like no one understands…
But I have also learned how beautiful life is. That each moment that I get to spend with my husband is a gift. That, laughing, in spite of a really bad day, can make your heart feel light. That, even though you’re in a hospital room, it can still be a romantic date..
Through everything that I have been struggling with, and the many lessons that God has been teaching me, there is one that stands out about the rest. I need to rest in Him. He is my Rock, and I need to trust that He knows what’s best. Even if I don’t agree with Him, he knows what’s best for me, for Dylan, and for our life together.
When I was at camp, many years ago, I was challenged to pick a “life verse”. One that I could memorize and turn to when I was in a crisis or just needed to be reminded that I have a purpose. For the longest time, I didn’t have one… But my dad sent me this verse a few months ago, when Dylan was going through a rough time, and it has stuck with me ever since
From the end of the earth I will call to you when my heart is faint; Lead me to the rock that is higher than I.
I hope that my story hasn’t been too depressing. Really, that was not my intention. I simply wanted to share my thoughts and feelings about this subject, in hopes that it will encourage anyone who is on a similar journey.