Confessions of an IBD Ninja
Most people living with Crohn’s disease or ulcerative colitis will tell you that inflammatory bowel disease (IBD) is an invisible illness. Life with IBD is isolating. Many of us are shamed into silence because of the very nature of the disease. While many of us experience symptoms that are bathroom related, we know that there is much more to living with a chronic illness than others realize. There is a lot that we could say as patients, but many of us never do for fear of embarrassment, rejection, scorn or dismissal.
Since 2014 I have vowed to no longer be silent. I vowed to be just one voice in 5 million patients world-wide living with IBD. I vowed to raise awareness, offer support and provide encouragement and laughter. In line with my mission, I present you with the Confessions of an IBD’er.
I feel guilty.
Not only do I feel guilty that I am living with a disease that I have no control over, but I also feel guilty for being a burden to others. I feel guilty that some days I can’t get out of bed. Weakness and pain consume me and if I so much as move, I’ll be sent running to the bathroom. I feel guilty that I’ve lost control of my life. I feel guilty because I can’t keep up with my responsibilities. I feel guilty for needing help and asking for it. I feel guilty because there is no way I can prove to you that I am truly sick. I feel guilty for leaving parties early or not even going at all. I feel guilty missing out on holidays or for keeping my family from visiting their friends because I’m too ill to get out of bed for travel.
I feel alone.
As I mentioned before, IBD is isolating. Even if you have the most supportive family in the world, you still feel like they could never possibly understand your situation or your pain. Many of your friends, family and loved ones try to offer up words of encouragement, sympathy or advice. Those things are all well and good, but sometimes, you just need empathy. You can feel like no one understands. Sometimes you can’t leave the house. Some friends or family members will never understand what it’s like. Because of this, they will “abandon” you in your time of need. They don’t mean to, but it happens. They don’t know what to do with you or how to help so they “give up.” Some of your friends will stop calling. And that’s where the guilt comes creeping back. No one wants to hang around with a sick person, right?
I feel like a burden.
Not only do I feel like a burden to my family and friends, but I also feel like a burden to my doctors. I know that I can’t do this disease thing alone… I know that I need help. But I hate depending on someone else to help me. I hate being a bother. I hate having to say, “Hey, can you get me a cup of water?” because I’m too weak to get out of bed. I hate calling my doctor in the middle of the night to ask if I should go to the ER. After all, doctors have lives of their own.
I feel like I’m lazy.
Some days I can’t go to work or school. Some days I can’t cook or clean. Some days I can’t take a shower. Some days I can’t get out of bed. Some days I can’t move. Some days I can’t appreciate my family or socialize with them. Some days I can’t socialize with my pets. Because of all these things, I feel lazy. And more often than not, no amount of reason can convince me otherwise.
I feel like I’m crazy.
I can’t explain it, but some days I wonder if I’m really “that” sick. I mean, there are days that I can work and be sociable. There are some days where I get a sudden burst of energy. During those days, weeks or months when I manage to avoid the ER or hospital, I wonder, am I sick… really? I don’t know if it’s because I’m in denial or if it’s because I really am feeling better… but I definitely question my health.
I feel like there’s no hope.
When my disease flares last for weeks, months or even years, I wonder if there is ever any hope of remission. I wonder if I’m destined to be dependent on others for my care. I wonder if there is ever going to be hope of finding a cure… or at least a treatment that will make me comfortable. I feel afraid to hope for those things, too. Because just when I get my hopes up about a new medication or treatment, they fail me and thereby breaking my spirit.
I feel like I lost my sense of who I am.
Living with a chronic illness makes you lose yourself. You feel like you become your disease. The disease affects every aspect of your life and you have no control. You are at it’s mercy. You feel it has redefined who you are. It robbed you of things you used to enjoy. Things you used to have the energy for… and now life just seems gray and dull. Your body becomes ravaged by a disease that is seeking to destroy you. You look in the mirror and you don’t recognize yourself.
Like any chronic illness, IBD is earth-shattering. Despite all the terrible things that the disease brings with it, what has always given me the most comfort is knowing that I’m not alone. There are others out there who know exactly what I’m going through. They will be there for me during my darkest days. They will help me keep my sanity. They will understand if I have to duck out of a party early… they know what it’s like to live with IBD. And I’m thankful for that.