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What I Want You To Know

To all the caregivers, bosses, classmates, and friends. To all the boyfriends and best friends, to the girl that I see at yoga class. I want you to know this:

I have IBD. It stands for Inflammatory Bowel Disease. (It does not stand for Irritable Bowel Disorder, or anything else, and it’s not the same as IBS). If you know me, you probably know this. I talk about it frequently. I volunteer for various organizations. I have my elevator speech worked out, and I can rattle off definitions, facts, and statistics in my sleep. But do you know what that means to me, and the other patients who live day in and day out with IBD?

Do you know that it’s not just some medical jargon that I apply to my digestive system? It’s so much more than trips to the toilet and bi-monthly infusions and doctors’ visits. This is my life.

We all know IBD awareness is important. But there are more reasons that I want you to know about it. I want you to be aware on a personal level, because for this single person, (and millions of others like me) it affects my whole life. I want to be able to go up to someone- a friend or a stranger, and when I say “I have Crohn’s” or “I have Colitis”, they get it. They get what my needs will be, they understand that it’s serious, they trust that I’m not seeking attention- or worse, pity. I want people to have a basic understanding of my disease, and a more than basic respect for my experience. So this is what I want you to know, and I’ll do my best to explain it.

IBD is really complicated. When I was first diagnosed, no one told me this. No one told me that it would affect me in ways I could never expect. A lot of those ways were emotional and social. A lot of those tested my strength, and my friendships. My whole life changed, some for the worse, and some for the better, and even when I’m in remission, know that I will never be the same person.

I want you to understand the urgency. Think about the last time that you had an accident. No, really. Were you two years old? I was twenty-eight. I was in a bar. The line was too long for the ladies’ room. People don’t understand, I mean no matter how strongly you explain it, they don’t. Everyone has said “I can’t wait, I gotta go!” at some point- on a road trip, in a long line, but they hold it. We can’t always, and it’s more than embarrassing. The first few times it happens, it’s shameful. Learning to control your bowels is one of the first things you learn in life.

When we lose that control as a teenager or twenty-something, your mind can hardly process it. Our body is reverting on something it knows to be right, both functionally and by our social upbringing, and there’s nothing we can do. But then it happens again, and again and again. After a while, we stop holding back the tears and learn to handle it. We take clean underwear and wipes everywhere we go. We learn to clean up the sh*t and get on with life. We learn that this doesn’t have to stop us from doing what you want, we do what we can and keep moving. And we find that’s a life lesson that we can take to other areas of life.

strength character successI want you to know about the pain. This is a tough disease, really, it’s hard to handle. Many patients of Crohn’s and Colitis say that the pain is the worst part. It’s deep in your gut and in the rest of your body, and when your gut can’t handle it anymore, it moves to your joints, to your head, to your bones. It’s a pain we all deal with, for some of us, it’s constant, and we forgot what life without it is like. Sometimes it’s in our digestion- the pain of going hungry is something we choose over the pain of having food go through our bodies.

Can you imagine what that is like? Hunger- another very basic human instinct, like relieving ourselves, is taking in nutrients and calories. We’re sometimes forced between fulfilling this basic need and avoiding the pain. That is how bad it can get. Could you comprehend being faced with that choice? And often, there’s no end in sight. We don’t stop because of this. For people who don’t know this pain, it would be reason to take a day off. For us, we push through as best we can. We live our lives, we work our jobs, we raise our children. For any amount of weakness we show you, we’re holding much more in. Because of this, we’re strong. We endure. We can handle so much more than the average person.

Understand that IBD can set us into cycles. Stress is a big one. Even basic, everyday stress – finals week, deadlines at work, arguments with our partners – you never know what is going to trigger symptoms. And dealing with symptoms on top of these everyday stressors increases the stress – which makes the symptoms worse, and before we know it, we’re stuck in a downward spiral. Please know that acts of kindness and support that you show us could be what breaks the cycle.

When I was in the worst of flares, I could not think of anything I wanted more than someone to listen unconditionally, and spend time with me, even though the most I could do was sit around watching movies. We learn to not take things for granted. We appreciate the healthy times, and we’ve gained the perspective to live every moment, to not let life pass us by- not in a cute-quote-on-a-magnet kind of way, but in a real, almost desperate way. We learn to live our lives to our potential, to not waste a minute.

be kind for everyone you meet is fighting a hard battlePlease know that sometimes, I will need you to make an exception for me, to believe me. If I am exhausted from not absorbing nutrients and struggling to balance daily life, it is because I am near my limit. If I need to take an extra day off, to ask to use your store’s bathroom, whatever it may be- I’m not making excuses or taking the easy way out. This is why we want you to understand what living with Crohn’s or Colitis is like. To help us keep the integrity of our community, to recognize that we do our very, very best, when we are up against a barrier bigger than anything you’ve likely ever handled.

And through our desire, no- need to be understood, we have learned to understand others. We know just how important it is to learn to see things from another’s point of view, because we have learned how different each person’s experience with life can be, whether or not they are fighting IBD, or another disease, or whatever their obstacles may be. Because of this, we grew a little, out of the naivety of childhood and abandoned some of our youthful ignorance. We grew in empathy, another important value, another life lesson.

I want you to know precisely what “chronic illness” means. It means there is no cure. There is no end. We have no choice but to deal. And when that gets too hard, we dig deeper and find strength we didn’t know we had, then we deal some more. There literally is no choice. When you think you’re out of strength, you find more. The human spirit can prove amazing.

Think of the hardest athletic event you can. A marathon? An Ironman triathlon? The Tour de France? Sailing around the world? All of these have a finish line, a limit, a time period that eventually allows you to say, “I did it, I can rest now”. Chronic illness is harder than all of those. We can’t drop out of this race. We have no coach. No one handing us a medal. We have no off season. We just. keep. fighting. You’re not used to this. You get a cold and you know it’s going to be over in 2 weeks. You feel horrible, but each day you feel a little bit better, you focus a little less on your discomfort and a little more on being normal. You have an understanding that this is going to end, like it always does. You break your leg. You can’t walk for a summer. You give up your summer activities, you can’t go swimming, you get strange tan lines. But each week, you get closer to getting out of your cast. And once you’re out, you get stronger and stronger. Forget everything you know about sickness and pain. You can’t comprehend disease with no end until you’ve lived it, and when, as a patient, this concept hits you, it hits hard.

you never know how strong you are until being strong is the only choice you haveBut because of this, because we are left in this situation without an opt-out button, we become so strong. Stronger than we ever imagined, and wiser too. We don’t associate our condition with weakness (although this is real, it’s not lasting). We associate it with resilience, strength, empowerment. The innate knowledge that we have it in us to survive, and we know because we’ve faced it.

We call on the quote “You never know how strong you are until being strong is the only choice you have”, and understand it is truer than true, for us. Not even endurance athletes can claim this. They don’t know strength like we do, because pushing through is not an event for us- it is life. Through it all, we keep a humble sense of pride and accomplishment. We don’t get a medal or our picture in the paper, but we get a stronger sense of ourselves, and maybe even the chance to inspire the next person. And all this is something that I wouldn’t trade for anything.

I want you to understand the complexity. There are positives and negatives wrapped up in every element of life with this disease. In every bout of pain we find the opportunity to strengthen, in every accident we find a dose of wisdom, in every friend lost we find one who does understand us, one that we wouldn’t have met if it was not for IBD, and we are instantly bonded because of our innate experiences with disease. IBD is one big life-altering package deal. These all come together, the positive, the negative, and the whole in-between range.

I want you to understand how much I wish I could explain this to others, how I wish I could let someone feel the pain, the physical and emotional pain, for just a day. But I also know that no one is able to understand this that hasn’t been through it. We want you to ask questions, to listen and not judge, to be accommodating to our needs while also helping to empower us, believe in us. To acknowledge that you don’t understand, but you want to know anyway. Our experiences are important.  To us, and to the world.

Finally, I want you to know that through all the challenging flares, extreme pain, loneliness, doctors, accidents, and everything else that comes with Crohn’s and Colitis, I am a better person. I am not just stronger in one aspect, I am wholly a better person. How can I explain that I wouldn’t wish this on someone else, yet at the same time I wouldn’t give it up? Because these diseases are so hard, we find greater rewards. In the movie A League of Their Own, Tom Hanks’ character Jimmy Dugan says “It’s supposed to be hard. If it wasn’t hard, everyone would do it. The hard is what makes it great”, and this is true. I’m glad life didn’t give me an easy path. This one is worth it. I have purpose and perspective on life that many people aren’t ever blessed with, for the entirety of their life. I have strength, resilience, and a true appreciation for things like true friends, unconditional support, and even the mere fact that there are others out there on this journey with me.

So when I say “Ask Me About My Crohn’s” or “Ask Me About My Colitis”, I want you to see the glow about me. To respect me and my experience. To be inspired by me. While I do want to educate you, I don’t want you to focus on my dash to the bathroom or weight fluctuation. I want you to ask why my eyes light up at the top of the mountain I just hiked, why I work so hard to accomplish things in my career, or even why a simple, painless meal with good friends can light up my face like a kid on Christmas. I want you to see my drive and passion and wisdom and stronger faith and purposefulness and optimism and confidence and all of the hidden treasures we pick up along this journey, and I will tell you, I am proud of myself, I am proud of who I have become. I’m glad you asked, I am this way because of IBD.

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33 Responses to “What I Want You To Know”

  1. Janelle April 24, 2014 at 2:49 am # Reply

    Thank you so much for this.

  2. Corina Cox April 22, 2014 at 5:49 pm # Reply

    I have suffered with ulcertive colitis for over 15 yrs. Ive seen so many drs its not even funny. One of which put me on a ton of pills and said when u get colon cancer we will figure out what to do. I saw another Dr here in ohio. Who is a wholist Dr. I spent an hour with him and learned more then i had in 10 yrs. Pretty much 2 sum it up all meat diet. Low fat protein. Water 2 drink. Not hot or cold. Room temp.Which means anything with a face. Sorry for putting it so harshly. Eggs,and meat. No stilulants! Chocolate,coffee,tea,Caffine…The whole point of fiber which is anything with out a face. Sorry. Is 2 clean us out. Which we all know we dont need. Protein passes thru soft and easy which doesnt cause the pain,cramping,bleeding,gas,bloating and spasms. He said if i could stick with this diet for 3-6 months it would help heal the intestines and i could slowly start adding fiber and other things back in. After 24 hrs i couldnt believe the difference. The problem is i am weak and chocolate is strong. I eat what ever i want 4 the most part. Depending on how much i want 2 suffer and what my plans are 4 the week. Now i am on remicaide infusions every 8 weeks 4 ever. Im lucky enough 2 have a friend that has siliacs disease. So we can talk about our issues. I dont know if this will help anyone or not. The article touched my heart and my tummy. Im only 37ish so i know im not a Dr or the smartest person around. Just wish i could get people 2 see what a diet change could do. Granted im not strong enough 2 follow the diet like I should. It does help. Maybe it wont help some but maybe it will. Spending my days in pain and exausted. Hoping someday to have a normal day and have the confidence 2 go out and just live my life! Love and prayers 2 all!

  3. Virginia April 15, 2014 at 1:07 am # Reply

    Thank you for sharing this. Most of this hit the nail on the head for me. I’ve read it twice today and cried both times. I appreciate you putting all of this into words :) Hugs!

  4. kaylene April 14, 2014 at 1:16 pm # Reply

    Wow this is so powerful. You made me cry. Great article. Thank you so much. Everything you said is so true. I was diagnosed in Jan 2013 with UC. Thos disease is not easy. I’m currently on my 1st trial. God bless you and everyone with UC and Chrohn’s.

  5. Tamara Pickering April 3, 2014 at 2:44 pm # Reply

    wow, after months of suffering I just found out what I have three weeks ago…and I have not experienced all the you have yet I already understand what you’re saying. This is life changing, hard, painful, uncomfortable and unwanted. Some of the changes in me are for the better…my compassion for others as already grown off the scale. The pleasure on the days I feel good are found in such small things. What’s important has really become what’s important!

  6. jeri February 24, 2014 at 3:50 am # Reply

    Very very well said. I have had crohn’s for 30 years and this is exactly how I feel. Good job!

  7. Charlene February 17, 2014 at 9:53 pm # Reply

    You made me cry and I don’t cry easily. I have had UC for 25 years. I feel like you are the first person to fully understand. In fact you helped me understand my own feelings. Thank you.

  8. Mike December 10, 2013 at 4:51 am # Reply

    I’ve been moving towards being more open about my IBD (I used to have UC but had surgeries to remove it, still feel some of the same affects), but its been very hard for me to elaborate specific things, especially in how UC has affected me mentally. This hits the nail on the head so well. Thanks so much for writing this!

  9. Sarah December 5, 2013 at 3:04 am # Reply

    Thank you for writing this. I feel like I couldn’t have said it better myself. I shared it on Monday for IBD awareness week and have gotten such a strong, positive response from family and friends — even those I’ve lost touch with over the years. THANK YOU!

  10. Jessica December 3, 2013 at 7:04 pm # Reply

    I have never felt so understood. This is so powerful. I have never been one to talk about my IBD because I’m ashamed. But this has made me want to raise the awareness. If others knew and tried to understand, a huge burden would be taken from our shoulders. One less burden to deal with.

  11. Lauren Barros December 3, 2013 at 2:38 am # Reply

    This was beautiful an so amazing!! I wish all my friends and family would read this! Wishing I also had friends who has IBD. I just want people to understand me.

  12. Amanda Brooke December 3, 2013 at 2:02 am # Reply

    This is spot on, eloquent, and powerful. Thank you.

  13. Laura Franklin Schaffer November 20, 2013 at 4:08 am # Reply

    WOW, that was amazing:)

  14. Deb Keeffe November 5, 2013 at 11:17 am # Reply

    Thank you for taking the time to write this – you hit the nail on the head!

  15. Daniel October 23, 2013 at 6:17 pm # Reply

    Great article. You articulated so well what we go through. Thank you so much!

  16. Victoria October 13, 2013 at 12:08 am # Reply

    I read this story, I have IBD, and I got to control it through diet. When I am inflamed it seems I am 6 months pregnant. It’s terrible, it is because I ate something I should not, or because of stress.
    My wonderful grandchild has Crohn, but she controls it with diet. She became vegan and eliminated some food, and she is fine. She has stress, naturaly and this does not help, but she is good and can live a good life. I am proud of her.

  17. Lorne Riding September 17, 2013 at 2:07 am # Reply

    I have a niece with this disease, but I never realized the deep implications. Thank you for waking me up. I love her dearly, and now I shall love her even more.

  18. Tony Sclafani September 15, 2013 at 3:14 pm # Reply

    This is absolutely beautiful. And, for me, and likely many other people, this is also my story. My journey. Given the option, I would never, ever, under any circumstances, remove Crohn’s disease from my life. Despite the pain, isolation, ER visits, surgeries, accidents (ad nauseam) . . . despite all of that . . . the true gifts I have found, mostly in myself, of empathy, resilience, compassion, strength, determination, fortitude, insight . . . I cannot imagine my life without those things. Thank you so very, very much for writing this. Today, in this moment, I feel incredibly proud and incredibly fortunate. Thank you.

  19. Louie September 14, 2013 at 11:51 am # Reply

    Thank you for sharing this… I have a friend who has crohns and I would do anything to help her because she means the world to me. This gives me a better understanding of what she is dealing with and what I can do to make her life better, especially in reducing the stress/negativity in her life. I have read up on Crohns but most of it was medical jargon… you did an excellent job of helping me understand the personal side. Thank you very much and God Bless You!

  20. Melissa September 14, 2013 at 2:12 am # Reply

    Thank you so much for writing this post – this is exactly how I feel about my disease, but have such a hard time expressing. This disease is both a blessing and a curse; thank you for describing it so perfectly!!

  21. Samantha F September 14, 2013 at 12:07 am # Reply

    Excellent article! I wish I could spout things out as elegantly as this.

  22. jennifer September 13, 2013 at 5:58 am # Reply

    Thank you for posting this. It’s everything I’ve wanted to say to people but couldn’t, and it made me realize things about myself that I hadn’t realized before. This is amazing.

  23. Tammy September 13, 2013 at 3:24 am # Reply

    I could have written this. (probably not quite so well, as you did ;) )
    I am sorry that you have to battle this and i thank you for sharing.
    Thank you for promoting public understanding of what we endure. Even our care givers and companions can sometimes need reminding.

    If I’m on my feet, people won’t even believe me when i say I’m in sick and pain, never mind help or give up a bathroom stall for me, but if I’m in my wheelchair people trip over themselves trying too help.
    Wake up world. Please. Stop judging based only on what you can see on the outside.

    It’s not going so well for me right now. the tests seem endless. So far all they have done is find more systemic problems. it was uplifting to read this. though i wish no one this life, it’s comforting to know I’m not the only one with spare underwear stuffed in my bag.
    Upward and onward
    (for it truly is our only choice)


  24. kevin September 12, 2013 at 9:58 pm # Reply

    Thank you for writing this. You communicated so well what I’m sure we all feel, yet most of us can’t articulate. There were things I connected with so deeply in this article, some that I wasn’t even aware I was feeling. You have an amazing ability to communicate, thank you for sharing it.

    • chris September 13, 2013 at 3:22 am # Reply

      Wow. I have been trying to put it into words for over 20 years that the normal person could understand. I however couldn’t have done it this well. This is a must read for every person on the planet. Very well said. Thank you so much.


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