What Every Patient Needs to Know

To all my dear friends living with any form of Inflammatory Bowel Disease: you and your life matter. If I could help you realize just one thing, it would be that YOU are important. During your disease course, you will have moments of feeling like you’re a burden, a failure, or a disappointment. I tell you this to let you know that you’re not alone. I’ve been there many times.

Your mind will play tricks on you.

That negative voice inside your head telling you that your disease classifies you as “damaged goods” is lying. You are not your disease. You have a disease and it isn’t your fault. You didn’t cause it and you can’t prevent it. Your life may have changed since your diagnosis, but it doesn’t define you.

Others will invalidate your disease

… whether intentionally or by accident. Take everything the anyone says with a grain of salt. Anyone that breathes air is fighting a battle. What may be small in their eyes, may be a huge deal to someone else. Some people will say hurtful things out of ignorance. And it won’t matter how many times you try to explain things to them, they will never truly understand your battle.

Everyone’s disease journey is different.

While there are a few people who will share aspects of the way your disease plays out, just like fingerprints, everyone’s disease is different. Sadly, IBD cannot be predicted. Finding the right treatment for you will be all trial and error. What works for you may not work for someone else and vice versa. Which leads me to my next point: BEWARE OF MIRACLE CURES.

There are a lot of bad people out there who prey upon desperate patients. These people scour the internet looking for patients who are seeking relief. They will tout their miracle cures and remedies as gospel and then charge you an arm and a leg. At the end of the day, you’ll more than likely be disappointed by the results. You’ll be left wondering what you did wrong and what you could have done better. Don’t fall into those traps. As of now, I’m sorry to say, IBD cannot be cured.

Don’t be too hard on yourself.

You are fighting a great battle. You will have good days. You will have bad days. When bad days surround you, remember that you are not alone. Support and encouragement are out there. Remember that there’s always something to be thankful for. Hold onto the good things in your life. Let them be your “constant” amidst the unpredictability of your disease.

Hope IS there.

Sometimes you have to dig deep to find it, but it is. You may find it in your friend who “gets it.” You may find it in a doctor who listens. You may find it your church, synagogue, temple, etc. Or you may find it in a beloved pet who is always there for you in your darkest days. Whatever your hope, again, CLING to it. Your hope can help more than you think.