5 Tips to Help You Cope with IBD
When you’re newly diagnosed with a chronic illness such as Crohn’s disease or ulcerative colitis, it can seem pretty overwhelming. You may wonder, “what next?” There will be a lot of questions racing through your mind. Learning how to cope with the disease will be the hardest part. For three years, I struggled with coping. But eventually, I learned a few tricks to help me out and I’d like to share them with you.
For me, support has been a major breakthrough in my ability to cope with ulcerative colitis. Until I found support – and I mean people like me – I felt alone and misunderstood. I felt like a burden to my loved ones. I got online (Facebook, Twitter, Instagram) and typed in several hashtags (#IBD, #Crohns #Colitis) and I was instantly connected with thousands of others who were just like me. They knew what it was like to struggle with moonface, bathroom issues and the pain and confusion of trying to live your life day to day with an often debilitating disease.
Find your thing
Everyone needs an outlet. Everyone needs to express their frustrations about their disease. Some people journal. Some people do yoga. For others, they get lost in movies. For me, it was drawing a little cartoon ninja who embodied my battle. Colitis Ninja freed me! She rescued me from the darkest point in my disease and reminded me of my strength. I would encourage each of you to find a hobby as a way of expressing yourself. Maybe you like to knit. Maybe you like to make funny videos. Or maybe you like to bake. Whatever it is, find your thing.
Be your own advocate
A lot of people will try to give you advice on how to treat your disease. Some of their suggestions will be really bizarre, but most of them will be out of genuine concern and wanting to help. It will be frustrating, but you have to remain calm during those instances. I would also advise you to have an elevator speech ready for just such an occasion. Most people don’t understand the complexity of IBD. You are your best advocate. Even when it comes to doctors. Most doctors have been trained in treating your disease, but it’s OK to get a second opinion and it’s ok to let them know when you are uncomfortable with a treatment plan. Speak up for yourself. If you don’t, who will?
Learn to laugh at yourself sometimes
Something I have found to be key in my own life, is learning to laugh at yourself sometimes. Yes, IBD is a serious disease and should not be taken lightly. It’s life-shattering. It’s scary. People have died from these diseases (it's rare, but it happens). But if you can’t find the humorous side, you’re going to be pretty miserable. Find others with the disease and make jokes with them. Laugh at the fact that your veins are fickle and the nurse has to dig around in your arm to hook you up to an IV. Joke with your friends about your busted guts and their mission to destroy you. Make poop jokes… I’m telling you, until I learned to laugh at my situation, I was miserable.
Take time for you
Living with a chronic illness can make you feel guilty. You sometimes cancel plans because you don’t feel well enough to go out. You feel like you disappoint your friends when you can’t come see them. Or you disappoint your family when you can’t pull your own weight and they are “forced” to care for you. It’s natural to feel that way, but you don’t have to. Not having the energy to do things isn’t your fault. The fact is, your body is telling you when you need to rest and you should listen. Sometimes you just need to relax. Sometimes you just need to sleep. Sometimes you just need to take a raincheck and that’s ok. If you can’t take care of yourself, how can anyone expect you to take care of them? Life happens. Illness happens. Not everyone will understand, but again, that’s why finding others who have been there too is extremely beneficial to your sanity. Take care of you!
When you’re diagnosed with a chronic illness, it will take time to adjust to a “new normal”. But it can be done. Be patient with yourself. Be patient with others. Not everyone will understand your situation. Even if you do everything in your power to make them understand, they won’t. In those times, just breathe and remember that you are not alone in this. There are 1.6 million Americans who are battling IBD with you.
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