So you’ve been diagnosed with an incurable disease. Now what?

Letter-2BBlog

Dear New Patient with Inflammatory Bowel Disease Diagnosis…

If you are reading this, that means you are probably scouring the internet for every piece of information you can about your disease. You’ve probably been researching natural remedies or reading about miracle cures and diets. You’ve been reading up on the various treatment options (some of which sound really scary). Some of you decided to research the function of a colon–you knew it was a part of digestion, but you didn’t know just how important this organ is. Many of you have found success stories where people are living happy lives, but I’d be willing to bet that most of you are Googling IBD only to find worse case scenarios. Before you Google anything else about IBD, I ask for just a few moments of your time.

Chronic Illness Can Be Overwhelming & Scary

Being diagnosed with a chronic, invisible illness can be overwhelming and scary. For some of you, you may be thinking, “Oh, I’ll be fine. I’ll just take my meds and move on with my life.” Maybe some of you have family members or friends with chronic diseases. Some people are ok. Some people with IBD do not even have to take medication–which is really awesome and a worthy pursuit if you can get away with it (my Mom has!). Who wants to be on meds forever, right?! Unfortunately, others will have to take some really harsh medicines in order to get their disease under control and in remission. Then there’s always the possibility of surgery.

I’m here to tell you that no two IBD journeys are the same. What works for you may not work for another. What happens to another person, may not happen to you. These horror stories you read are not guaranteed, and on the same token, success stories are not always the dream you’d hope they’d be. I know because I’ve been there… with both good and bad situations.

Pain Doesn’t Last Forever

You will have some really bad and scary days ahead. Days where you’ll wonder if you’ll ever make it through the night as you lie on the bathroom floor crying and in pain unable to keep anything down (or up as in the case of IBD). On these days, allow yourself to mourn your former life. Allow yourself to cry and be vulnerable. Remember, pain doesn’t last forever and you aren’t Superman.

This new diagnosis will change your life forever. Something else that is important to remember is that YOU ARE NOT YOUR DISEASE, you have a disease. Big difference. I would encourage you to use this difficult time to change you for the better instead of letting it take over and make you bitter. A positive attitude (though difficult in times like these) makes a huge difference.

You Will Have Good Days

You will also have really good days where you feel like you’re finally getting somewhere in the management and treatment of your disease. On those days, celebrate. Make the most of those moments and be thankful.

There will be people out there who won’t understand your struggle. There will be people who will not realize just how sick you are and may even get upset if you have to skip out on activities and outings. On the outside, you will look fine, normal, healthy. But on the inside, what people won’t see, are your bleeding, burning, screaming intestines and achy joints. REST WHEN YOU NEED TO. Don’t be stubborn, you’ll regret it in the end.

Support is Key

Something you may not realize now is how desperately you are going to need support. Someone who has been there. Someone who will listen to you and not only sympathize, but also empathize with you. The most comforting words I’ve heard over the course of my disease are “ME TOO!” Know that you are not alone. There are so many people out there who are ready to be there for you during your darkest hours. People who are battling with you. They get it. They’ve been there, done that.

If there’s one thing I learned about chronic illness, it is this: you will discover who your true friends are. You will discover that in times like this, you will bond with people in ways you never knew existed. There are some friends who are only fair-weather friends. Unfortunately some will never understand, and you will probably never make them “get it.” Accept this and move on. Life is too short to worry about what other people think or do.

This is YOUR Battle

Also remember that this is YOUR battle. Even if someone shares your disease, you may not share the same view on how your disease should be managed and treatment. Do what’s best for you (and make sure you keep your doctor in the loop).

Get a good doctor. Get a second opinion. This is your health and you have to be willing to be kind but firm and take control of your healthcare. Don’t let any doctors, nurses or friends pressure you into a treatment you are not comfortable with. It’s ok to disagree with your doctor sometimes. Find a good doctor who understands your disease and one who is truly willing to listen to you and your concerns. This doesn’t just apply to the specialist, but it also applies to your general physician.

Laughter

In general, chronic illness is not something to take lightly and really, not that funny. There is a big difference, though, between having someone laugh at you, and having someone laugh with you. At first, you will feel awkward, embarrassed and even ashamed of discussing the realities of your diseases. However, sometimes it is vital that you find humor in your situation. The reality is, many topics considered taboo will become everyday conversation. This was something very difficult for me to accept, but eventually I did and I am much better for it.

There is a lot of good information out there to help you get a better understanding of Crohn’s & UC. ┬áDo your research, but remember everyone and their mother can write whatever they want to on the internet no matter how inaccurate. Watch out for those miracle cures. Diet varies from patient to patient, so please be cautious when trying something new. There are some who have had great success with diet change, but there are also those who will try to sell you “snake oil.” Take everything you read with a grain of salt and use your best judgment.

You Are Stronger Than You Think

You are stronger than you think. No really, you are. Some days you won’t be able to get out of bed. You will want to give up. Don’t you dare. Your bad days (weeks, months, or even years) don’t mean you have a bad life. Again, this is why support is SO VERY IMPORTANT.

As I’m writing these words, I’m gearing up for my first ever Take Steps walk in Baton Rouge. If you had asked me when I was first diagnosed if I would ever be advocating or fundraising for Ulcerative Colitis and Crohn’s Disease, I would have told you no. But now, having lived with this disease for four and a half years, I would tell you that raising awareness, offering support, encouraging others and helping them to laugh is one of my greatest passions. Now I can’t imagine my life without my disease. Keep fighting my friends!

Sincerely,
Amber
(aka Colitis Ninja)