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  • Sati Rampersad

Eyes Wide Open!


Acceptance:

Before I continue my story from my previous post, I just want to address my fellow crohnies (sufferers sound so negative!) about your feelings regarding your diagnosis. My shock and confusion came from ignorance and fear of the unknown; that's a normal human reaction, and Crohn’s was quite rare in the ‘90’s. Although it's more prevalent today, or maybe it’s just now more easily diagnosed, it's still fairly uncommon by comparison to other diseases. In any event, you can still be caught off-guard. The first thing you need to do when you've been diagnosed with Crohn's Disease, that is, after you recover from the news and had your little pity-party, is to OWN IT. Don't go into denial. It’s perfectly acceptable to get a second or third opinion if you feel you need to. If it’s confirmed repeatedly, you've got to accept that you now have a chronic disease which means there’s no cure. YET! Hey! The rate at which technology is racing ahead, a cure could be around the corner. In the meantime, don't beat yourself up asking all the “why” questions. There are no answers. Sure you feel cheated and that it's unfair. I know you’re thinking ~ look at the way everyone else is fine and going about living without any problems like yours! No one knows what you're going through! First of all, you have no idea what problems other people are dealing with. And second, it truly sucks but it could always be worse. Couldn’t it? Just think about it.

Speak Up:

I certainly went through all those emotions myself for a while until I decided that that kind of thinking was pointless, plus I was making the people around me just miserable. Most importantly, I had a young son who needed and depended on me. Yes, I sometimes still feel that way on a bad day, I'm only human. But you have to strengthen your mind and not let these emotions take over. Talk to someone you trust, join a support group, or, with social media at your fingertips, reach out to fellow crohnies like me. You don't have to feel isolated. It's also important to follow your doctor's orders, stick to your treatment plan even if you think it's not working. But read up, research and try to learn as much as you can about your condition, discuss new drugs or alternatives you've heard or read about with your doctors. BE YOUR OWN ADVOCATE! Don't be afraid to ask questions because they might sound stupid! Who cares if it does anyway if you can get answers that satisfy you ?

Beware:

Another important thing is that you not compare your treatment with another's. As most of you know, Crohn’s is a very complex and individualized disease which can occur anywhere in your digestive system. Each patient's symptoms can be different, the pattern and location of the disease may be different. Treatment is customized for every patient depending on severity, location, symptoms, reactions to certain drugs etc. In other words, cases can vary dramatically, therefore, there is no one-size fits all treatment. BEWARE of people out there who claim to have found THE cure for Crohn’s Disease! That’s a lie! People are making money by preying on the vulnerabilities and desperation of those of us searching for relief. How can someone find a cure for a disease without knowing what causes it? And that goes for any disease. Maybe they’ve found a treatment or a diet that helped a few people control their symptoms and who’ve gone into remission and that’s great. But IT'S NOT A CURE; a cure has to work for EVERYONE! People can be very convincing when you're desperate, believe me because I got duped, sort of. I'll explain in my next post as I continue my story.


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