I created Colitis Ninja nearly ten years ago right before I found out I had to have surgery to have my colon removed. Some of you know the story already, but in case you don’t and would like to read it, you can find it here. Coping with an illness you didn’t ask for and can’t cure is one of the most difficult things I’ve ever had to do. One of the ways I’m able to do that is to share my story with others who often feel hopeless, too. As a patient living with inflammatory bowel disease, I want to help you find the hope that your disease stole from you. To do that, I often wear a mask. And I’m not talking about one of those “Covid Masks”. I’m talking about a Ninja Mask.
There is Hope
Because chronic illness is so hard to cope with there are a lot of sad stories out there. Chronic illness isn’t something you take lightly. No matter how hard you try, eventually you will come to a point in your disease journey where you’ll feel like giving up. I can’t tell you how many times I’ve been there. THIS VERY REASON is why I continue with Colitis Ninja. I want you to know that despite everything else there is hope. Your feelings are deceitful. And that voice inside your head will tell you that all is lost. But I promise you, there is hope. I first found hope on social media.
Been There
Because I got on social media, I connected with a lot of people who share my disease. Many of them were going through the exact same surgeries at the exact same time I was. While social media can be a fantastic place to find support when you’re dealing with life crises, it can also be a very dark, scary and discouraging place. It’s true that some patients have a harder time coping and finding the hope while living with chronic illness. But that doesn’t mean you can’t learn to cope. That doesn’t mean that life is hopeless and that you’ll never find the strength to keep going. I know because I’ve been there.
Easy for You to Say
Sometimes people contact me because they have an issue with the way I put a positive spin on things. They don’t like the humor I use to cope. They don’t like the encouraging language I use to help patients get through their dark moments. They may say, “That’s easy for you to say, you’re one of the 94% who have a successful j-pouch.” Yes, that is true. I am very blessed and grateful that my j-pouch has been relatively good to me. But that doesn’t mean I wouldn’t LOVE to have a healthy colon restored to me. That doesn’t mean I have all my ducks in a row. And that certainly doesn’t mean my life is easy or perfect. There are a lot of things in my life that I don’t mention often. And there are other life crises that I don’t share with the public.
The Comparison Game
I hate the comparison game. The whole, “I have it worse than you!” bit gets old fast. I acknowledge that some do have it worse than me in some areas. But those people don’t know my whole story–they don’t see the other secret demons I face on a daily basis. The ones I hide. I know that there’s someone out there who always has it worse.
The way I see it, no one should turn their problems or anyone else’s into a comparison game. You should never downplay another person’s suffering. Everyone is dealing with something and no one has the right to judge the degree to which someone suffers. Often times, if you try to really understand someone who “doesn’t have it as bad”, you’ll find something in their lives that you’re glad you don’t have to deal with.
Self-Imposed Inadequacy
As stated above, some people do not like my encouraging posts. They tell me it makes others feel inadequate. Some won’t like hearing this, but many times inadequacy is self-imposed. I am aware that there is a lot of suffering. I don’t provide encouragement and hope to make others feel inadequate. I don’t do it to “brag” about how great my life is (because it isn’t). I do it to help others find the strength to keep going.
Success Stories DO Exist
There are plenty of sad stories out there–people who are hurting. There are also success stories of people living their lives with a j-pouch–but they aren’t online telling you about it. They’re too busy for that. Because of this, there is a perception that after you are diagnosed with a disease you can no longer find peace, or hope. Others need to know that you can cope. You can find your new normal. You can keep living your lives. I am a blogger because I am one of the “success stories.” You need to hear those stories.
To those who think the success stories aren’t helpful and that they make others feel inadequate, I want you to consider something. Those folks out there seeking to provide encouragement are doing it for a reason. They know what it’s like being pummeled by their own bodies day in and day out. They know what it’s like to have endless sleepless nights in pain. They know what it’s like to be hospitalized again and again. They are fully aware of what it’s like to lose all hope. I want you to know you’re not alone. And you don’t have to feel lost. I’m here for you.
