The other day, I told a friend about my chronic pain for the first time. At first I felt weird, because I was telling someone who knew me so well about a part of me they had never known was there. But we kept talking and eventually the weird feeling was replaced with relief, because I assumed that if I explained it well enough, this person would be able to understand me and my life the way I wanted them to.

But then my friend asked me, “why do you never talk about it?” and I responded in the most honest way I could, saying, “Well, its not your fault, but you haven’t experienced anything similar to this, so I didn’t think it would make a lot of sense to you.” My friend replied with an enthusiastic, “Yeah, you’re right. That’s so true.” And my heart sank. I wasn’t upset because what they said was mean; I was sad because what my friend didn’t know was that when I answered their question, I didn’t want to be right.

What I had said to them was basically “I never told you this because you wouldn’t understand how I feel,” and all I got back was, “Yes, you’re correct. I can’t understand you.” And that was really hard to hear, because I had finally gathered the courage talk to my friends about my problems the same way they talked to me about theirs, only to be told that they didn’t get it.

For a while, I was mad that my friend wasn’t willing to understand or support me in the way that I wanted. But eventually, I realized that peoples’ ability to comprehend my challenges is not a choice they make based on how much they care about me; it comes from what they’ve experienced themselves, and that’s not something they can control. It wasn’t my friend’s fault that they had nothing more to say than “I’m sorry, but I can’t relate” when I told them about my struggles. Because we can’t expect other people to truly know what it’s like to experience something when they have nothing to compare it to.

However, it’s still fair to expect them to support us. And something else I learned from this situation is that most people have a hard time supporting someone who is dealing with a problem they haven’t have themselves. But unlike understanding, it’s not because they can’t do it. It’s simply because they don’t know how.

I’ve come to terms with the fact that I can’t force people to understand what my life is like. There are going to be people who can’t understand and it’s not their fault or mine. But something that I can control is the way people support me and people like me.

So, to the people than can’t understand, this is how you can still show that you care:

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This is something I wrote to myself a little while ago. It’s a little different from what I usually post because I didn’t write it with the intent of sharing it, but I hope it is something you can relate to or learn from!

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Bad days. We all have them, and I’m pretty sure we all hate them. But what really makes a day bad?

A few days ago, I was about to go to bed when something upset me. I thought to myself, “Ugh! I hate when my day turns into a bad one right before it’s over. Everything was going so well!”

But then, a second thought passed into my head. Does one negative thing really make for a bad day?

The logical answer is no. So how does one tiny mishap make us feel like an entire 24 hours is ruined?

Well, even though the “thing” that turns a bad day from a good one may last no more than 10 minutes, the negative emotions that this “thing” sparks often last much longer. For example, let’s say you spill coffee on your shirt. Ok, great. You let out a sigh, clean up the coffee, change your shirt, and bam! The whole ordeal is over in a few minutes. Yet, if you’re anything like most people, you still feel like the day is ruined. Why?

Spilling coffee didn’t ruin your day; it just gave you a reason to feel upset. It’s like how getting a C on a math test doesn’t make you stupid; it just gives you a reason to doubt yourself. The situation itself is not responsible for the outcome. You are.

After you spill the coffee, if you go about the rest of your day with the mindset that you’re cursed and everything is going to go wrong, you’ll only notice the negative parts and the whole day will seem bad. The same thing happens in reverse. If you’re upset right before you go to bed, when you look back on your day all you will remember is the bad stuff, and you’ll conclude that the entire day was terrible.

When we let the negative emotions of one bad situation influence our perspective for every situation, we set ourselves up to believe that everything is bad-that our whole day is ruined.

To move forward, we have to get ourselves out of this cycle. We have to recognize that when a few bad things happen, we aren’t cursed, the world isn’t out to get us, and not everything will go wrong. That being said, we shouldn’t just ignore the negative parts of the day. Instead, we should recognize them, be annoyed for a few minutes, and then remind ourselves that what happened is in the past, and all we can do is leave it there and move on.

Try as we might to believe otherwise, bad days are not just caused by the accumulation of negative experiences. They are the result of letting one misfortune shape our perspective on everything else.

Spilled coffee only ruins our day if we let it. It’s a choice we get to make.

Sometimes, it can be easy to feel like we don’t matter. That unless our name has a tiny check mark next to it, what we say is not important. That unless we have the follow count of a small country, we can’t influence others. That unless we are in a position of power, our voices won’t be heard.

Sometimes I debate whether or not I should post the things I write. Is anyone going to read them? And if yes, are those people actually going to be affected by what I say? Am I creating change, or just saving more data to the cloud that will be ignored?

It’s easy to fall into traps like these. It’s easy to look around at people who are smarter, prettier, more popular, or more talented than you and convince yourself that because that person is in some way “better,” you don’t matter.

But you do matter. The words you say matter. The actions you take matter. They matter a lot. And it’s important to know that.

We are all different. We have different gifts, different challenges, and different perspectives. And it is because of those differences that we all matter; without one of us, the world wouldn’t be the same.

There are parts of all of us that nobody sees, but those parts of us still matter. And there are things we say that nobody hears, but those words are still important. Something big that I’ve realized is that you can’t let other people determine your own self worth. You matter, and that’s a fact. And you don’t need other people to validate it for you. Because even when no one sees you or listens to what you have to say, you still matter.

So, why does it matter that you know that you matter? (Try saying that 10 times fast). Well, without self-worth, you won’t have a purpose. You won’t have a reason to fight through whatever obstacles are in your way. And when you don’t have a reason to fight, it’s easy to let yourself fall into a dark place, and it’s easy to get stuck there. But you have the ability to avoid that. All you have to do is tell yourself “I matter.” The thoughts you have are valuable. The words you say are important. The actions you take make an impact. You, and everything you do, and everything you are, matter.

It’s good to remind yourself that you matter to other people. But the best thing you can do is find at least one reason why you matter to yourself and remember it. And the next time you get caught in a dark place, you’ll have that reason to pull yourself out. And no one can take that reason away from you, because it’s the truth; you matter.

I’m going to confess something here. Sometimes when I’m really bored I go on pinterest. And after a few minutes of scrolling through crockpot recipes, if I’m really bored, sometimes I search for “inspirational quotes.” And I watch the swirly thing swirl and wait for the sunsets and calligraphy to pop up on my screen.

But that’s not my confession. My confession is that I hate myself for doing this. And I hate “inspirational quotes.” Why? Because a lot of them are wrong.

For example,

“Make your own happiness.” Um… okay is there a recipe for that? Like do I have to smile all the time because my face gets tired easily.

“Just go with the flow.” Okay sounds great thanks. But what exactly is the flow? Is my flow going the right way? Probably not…

“When nothing goes right, go left.” Awesome! Cool! That seems easy. Wait… which way is left again? Can I go straight? What about east? Oh that’s the same as right? Wait shouldn’t I be going with the flow? Am I creating happiness right now? Ahhh!

Who comes up with these things? Do they really think that making sunshine is the key to life?

I used to love quotes like these. I would by lying if I said I didn’t have them hanging in my room. In fact, this used to be one of my favorites: “Life isn’t about waiting for the storm to pass. It’s about learning how to dance in the rain.”

It seems like a good perspective to have. When there’s a storm cloud above you, don’t hide in your basement and pout. Go outside and dance! Be happy!

But there’s a problem with this perspective, and there’s a problem with the message this quote sends.

Yeah, it’s fun to dance in the rain. Until you get wet and cold and tired. So sure, if the storm is short or if it’s not raining that hard, dancing in the rain might work out. If you’re nervous for a test, you can learn how to motivate yourself with your nerves instead of waiting for them to go away.

But what do you when the storm isn’t stopping, and it is raining hard, and there’s thunder and lightening? Should you still dance in the rain?

According to the quote, you should. But that’s where it’s wrong. Because this quote suggests the false idea that we always have to be happy. That if we aren’t happy, we’re letting the storm win and we’re failing as individuals.

However, happiness is not a state of being, or an end goal, or anything besides what it actually is: an emotion. And having one emotion all the time is basically the same as having none.

It’s true that life isn’t about waiting for the storm to pass. It’s not good to hide and let your problems, your pain, your sadness, and your fear keep you from going places and doing things. But life is also not just about dancing in the rain. Forcing yourself to be happy without taking time to feel your honest feelings, accept your challenges, and cope with your struggles is the same thing as hiding from them.

As a society we’ve created the dangerous idea that if we aren’t happy, something is wrong with us. That If we can’t figure out how to dance in the rain, something is wrong with us.

But it’s okay to sense the storm surrounding  you and be upset. It’s okay to hear the thunder and be scared. Because sometimes it’s not possible to dance in the rain, and that is okay.

I dislike inspirational quotes because while they can help us seek out the positives, they fail to tell us that it’s also okay to recognize the negatives. They send the message that happiness is the best way to handle pain, but that isn’t a realistic approach.

No, life is not about waiting for the storm to pass. It’s about recognizing the storm and accepting it for what it is. It’s about pulling on rain boots and a rain jacket and borrowing your friend’s umbrella. It’s about going outside and feeling the wind blow through your hair but not letting it knock you over. And if you want to dance in the rain, go ahead. And if you don’t that’s okay too.

You don’t need to be happy all the time. Of course it feels good to be happy, but once in a while it’s okay to let yourself feel frustrated and sad and scared because those are feelings too. And even though you might always have to brave some kind of storm, if you’re not in a dancing mood, it’s okay. Because you don’t have to dance in the rain.

It’s January 1st. Today, people are working out, eating salads, and meditating. But in three months, a good chunk of them probably won’t be. That’s the tough thing about new years resolutions; they’re hard to keep.

Imagine that your goal for the new year is to exercise every day. On January 1st, you go to the gym. On the second, you go. On the third, you go. On the fourth, you go. But on the fifth, you have a cold. You tell yourself, “whatever, it’s just a cold, other people workout when they have a cold,” and so you go. On the sixth, your cold is pretty bad, but you go anyways. But on the seventh, you’re really really sick. So you stay home and don’t exercise that day. Does this mean you failed? Has your success been ruined after only 6 days by something out of your control? I guess it depends who you ask. If you ask me, I would say your goal was pretty bad in the first place, because your ability to achieve it is out of your control. All it takes is one day without exercising and BAM! You failed!

It’s hard to set good new year’s resolutions because there are so many factors in our lives that we can’t control. And when you’re chronically ill, your body is likely one of those things that feel out of control. So how do you set long-term goals when it’s almost impossible to know how you’ll feel the next day? Here’s what I recommend:

Focus on routines, not on results. Don’t set a goal to lift “x” amount of weight within 2 weeks. Because if you’re struggling for part of those 2 weeks and you don’t reach your goal, you’ll feel disappointed even though you couldn’t control the situation. Instead, create a goal that is focused on a routine. Something open-ended like “exercise 3 days a week.” When you set a goal focused on a routine, you can achieve it even when you hit a bump in the road, and you can change your approach based on how you feel. If you aren’t feeling well, maybe you only exercise for 10 minutes that day. Or maybe you take a walk instead of going to a class at the gym. While your fitness level might not improve as quickly as it would have had you been focused on a specific result, you save yourself from “failing” due to your illness. And in the end, the routine you form is more important than one result.

There’s no doubt that chronic illness can make you feel like you’ve lost control of your body. It can make you think that you are a failure when you can’t do something because of how you feel. This year, the challenges you face due to chronic illness might stay the same. And they will probably still be out of your control. But setting routine-focused goals gives you back some of that control and works with your condition instead of against it so that you can succeed.

What do you think of when you hear the term “awareness month?”

Colorful ribbons? Charity walks? Fundraisers? Pink football jerseys?

In some ways, I think awareness months are great. They recognize conditions that are rarely cared about by those who don’t have them. They are times when people come together and show support for others who are sometimes like them, and often times not. They inspire people to donate to important causes. And they help people realize that they aren’t alone.

But when October ends and November begins, we shed our pink shirts and pull out the purple. We throw out the pamphlets from last week’s charity event and start planning our outfit for the one next Saturday. We move on from October’s cause(s) and onto November’s.

And I get it. I get that we can’t possibly support every cause, attend every event, donate to every foundation, and spread awareness about everything all the time. I get that when October ends, we do have to shed the pink and move on with our lives. And I get that one month of advocacy is better than nothing.

But what I don’t get is why we send the message that recognizing a cause for one month each year is enough.

It’s not.

May is IBD awareness month. But my condition is chronic. And yes, one month of support is great because there are many conditions that receive hardly any attention. But when that month ends, I’m still the same person. I still have the same disease. And I still want people to care as much as they do in May.

Awareness months are great because they bring people together. But more often then not, they don’t keep those people together. They are a glimpse into a life where people truly support and advocate for others that they might not even know. But then that glimpse is over and it feels like it will be forever before people will care again.

The causes we support during awareness months are causes that affect people every single day. And those people deserve more than just one month of support. 

So here’s my idea: we keep awareness months the same as they’ve always been. But during the other 11 months, we don’t turn a blind eye to the struggles of other people. So when May ends and June begins, we can still put away our purple. But we can’t stop caring. We can’t stop supporting. We can’t stop advocating. Because on June 1st people are still fighting IBD. Every day of every year people are dealing with something, and every day of every year those people deserve support. So we can move on from one charity event to another. But we can’t forget about the people who we raise awareness for. They don’t get to pack up their disease and wait for next year’s fundraiser; they need our support and our understanding all the time. 

We are all dealing with something. And even though we don’t all have an awareness month, or week, or day that recognizes our struggles, it doesn’t mean that they don’t matter. So the point I’m trying to make is that although awareness months do raise awareness, we don’t need matching shirts, fundraisers, and charity walks to show people that we care. We don’t need to wait around for a specific month or week to show support. All we need is to be mindful of what other’s might be going through and be there for the people around us as much as we can, whether it’s awareness month or not. 

If you had to teach people one thing that was important to you, what would your lesson be? How to cook? How to draw? How to remember where you parked at the mall? Sign me up for that class, please. 

7 years ago when I was in third grade, the kids in my class had the chance to get up in front of everyone and teach something to each other. And I remember this day very clearly because I took it upon myself to teach the class how to draw. Now, even though I don’t remember if I taught my friends how to draw a dog, or a dolphin, or a duck, I knew that it was going to be the best day ever because my classmates would finally stop drawing ugly stick animals. So I proudly stood in front of the whiteboard and carefully drew the best animals I could, step by step. When my turn was over, I sat down and listened to the next person to teach the class how to put on a swim cap, and I guess the story ends there. 

As you can imagine, I’ve come a long way since third grade. I’m sure you have too. But I can’t think of a time since that day that I’ve taught a group of people something that I truly care about. And that’s sad because there is so much that I want people to know. About me, about each other, and about life in general. But in the real world, we aren’t just handed opportunities to sit everyone down and teach them something. We have to make those opportunities for ourselves. So, 7 years later, here I am, writing to you. I may not have a whiteboard, or a worksheet, or a presentation, but that’s okay; there won’t be a test on what I say. All I ask is that you read my thoughts and try to learn. 

Below is something that I wrote a little while ago. I’m calling it “If I could teach the world,” because it’s about what I would do if I could teach the world. Original, right? Continue reading →

Disclaimer: I am not being sponsored by any of the apps below to promote their product. These are just some apps I find helpful and I hope you do too! I also realize that there are probably thousands of apps out there that do the same thing as the ones I mention but these are just my top 5 and they may not be everyone’s top 5. 

I know you are probably thinking, “5 apps? How much storage does she think I have?” But the thing is, you probably don’t need all 5. If you don’t take medicine, you don’t need the medication tracker. And, these apps aren’t going to transform you into some super organized, perfect person who never forgets about anything. But hopefully, they will make it easier for you to be a little more on top of your game.  Continue reading →

                      

Did you know that May is IBD awareness month? IBD (Inflammatory Bowel Disease) is a group of two incurable illnesses (Crohn’s disease and Ulcerative Colitis)  that affect millions of people every year. While research has come so far in treating and managing these conditions, there is still so much progress to be made.

And that is why I need your help! You have the power to spread IBD awareness by purchasing one of these shirts (CLICK HERE!). All proceeds collected will be sent to the Crohn’s and Colitis Foundation to fund much-needed research to find a cure for IBD. 

Show support for IBD not just in May, but every day of the year by wearing one of these shirts. I designed them myself, so let me know what you think! 

If you are unable to purchase a shirt, don’t worry about it! There are so many ways to show support for IBD through volunteering or simply educating those around you about these conditions. 

The campaign will last until June 4, so pass it along before time runs out! I would love to reach my goal of selling at least 50 shirts. 

If you have any questions, leave a comment below or contact me at livinthecrohnslife.blog@gmail.com

Thank you for your support!