Ten Things IBD has taught me

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IBD is no fun. There are physical symptoms and then your psychological well-being is often impacted as well. Yet, Crohn’s has taught me a great many things. Did I ask for them? No. Could I have learned them some other way? Probably. I am not going so far to say that, these are the good sides of the disease. And yet, I wouldn’t be me without them. As everybody, I am a work in process. There are days when I yell at insurance agents, and there are days, when I don’t have as much patience with others as I am advocating for here.
1.) Compassion: The feeling of this isn’t me, but it could be me.                 I may not know how debilitating a migraine feels, but I have been on the floor squirming in pain, unable to articulate myself. Also, to me it doesn’t matter if you are in pain from the stomach flu or a full force Crohn’s flare- pain is relative. By looking down on others when they have a stomach pain we don’t achieve anything. If you want compassion, start by being compassionate to others. It also takes your mind of yourself (at least for a while).
2.) Be your own advocate. This is big. You can have the greatest doctor, the best nurses, supportive friends and family, and yet, nobody knows your body as well as yourself. You need to put yourself first, and advocate for yourself. Read as much as you can, attend IBD conferences, support groups- do everything you can to know as much about the disease as  possible.

3. ) Honest communication. Society pressures us to automatically answer “fine” when asked “how are you?”. We smile, even when we not feeling it. We don’t tell our loved ones when we are sick, for fear we scare or worry them. We debate on when the right time is to tell the person we are dating that IBD is part of this. We don’t tell our bosses, and we minimize what is going on, for fear of being seen as a whiner. And indeed, there is a fine line between self-pity and acknowledging that a situation is really crappy. At the end of the day, you are feeling isolated. It’s a vicious cycle, but it needs to be broken. Be straightforward, be honest, be kind, but give people who care about you the privilege of honest communication.

4.) Saying no. One of the hardest things to do. It’s connected to putting yourself first,  and it requires strength and self-love. When I am in remission, I tend to overestimate what I can do, maybe to make up for the times I can’t do it all. I agree to too many projects, and then get frustrated. I blame my disease for things it is not responsible. The day only has 24 hours, IBD has nothing to do with it. I try to say no more often, to be able to say “yes” to things that matter.

5.) Asking for help. Our culture prides itself on not needing help. We idealize the lone rangers, who single-handedly will save the world from an alien invasion, while cracking jokes and looking amazing.We think that Sheryl Sandberg is a role model who does it all, and has great hair at the same time. So, for a long time, I thought asking for help was a sign of weakness. It’s not. Letting your friends and family in, telling them what you need from them is a sign of knowing yourself and of strength. You can’t deal with IBD by yourself.
6.) Patience. IBD, the concept of chronic pain, and the lifestyle associated with it, is hard to understand for most people. The idea that there doesn’t have to be a certain event or food that causes you to be sick is hard to grasp. It’s truly mind-boggling that we send people on the moon, but don’t know what causes auto-immune diseases. So inevitably, you get comments on where it comes from, what you could do, and how to “heal” or “cure” stuff. If it comes from people I love, I try to be patient. It took me long enough to come to terms with IBD, so give them time. Communicate with them, and explain to them why Aloe Vera won’t be fixing that “silly tummy”. Send them information. Drag them to support groups. Give them time to come around.

7.) Dealing with insurances. This is a more practical aspect of what IBD taught me. At some point, your insurance will either make a mistake or purposefully dick you around (let’s reject to pay for this blood test three times, only to quietly pay for it seven months later). Be calm. I have a spreadsheet on my computer, in which I log time, date, the name of whoever I spoke with as well as notes on what was said. I also have my GI’s practice on speed dial (the nurses there are very helpful). I check all of my insurance explanations of benefits, and compare them with the doctor’s bills. I am the squeaky wheel. I am calm, courteous, but I don’t back down.
8.) Getting rid of bad people.  IBD can be a great asshole filter. People will show their true colors when you’re sick, need rides to the doctor at 8 am, and cancel something last minute. Some reach out to you, try to help in any way they can. Others, not so much. Crickets. I try to be patient (see above), but I have become rather ruthless. I don’t have the time, or energy to be upset about others failing me. I’d rather be with those who care.
9.) Seizing the moment and finding joy in small things. It sounds cheesy, but it’s true. Anybody with an autoimmune disease, be it IBD, lupus, RA will know how fickle the disease  can be. You are happy and feeling good one day, you make plans, only to get knocked down on your ass the next day. Enjoy the good day, do what you love. Go for a walk, have coffee with a friend. Get your hair done. Do it now.
10.) Not giving up. I don’t.


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