No, I’m Not “Used to It”
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Oftentimes, people who are diagnosed with Crohn’s disease or ulcerative colitis (IBD) go through an enormous amount. For example, flare ups, hospitalization, tests, procedures, surgeries, and ER visits. In addition, a lot of time is usually taken off because of a persons chronic illness. This “time off” I am referring to can range anywhere from missing work/school to not being able to leave the house aside from medical things for months (or years!)

I have found that the first time someone with a chronic illness goes through something huge, other people tend to rally around them.

The first hospitalization, the first invasive test, the first surgery, the first emergency room visit … people are blown away and generally show an outpouring of love and support.

I remember when I was first hospitalized for my ulcerative colitis at 13 for two weeks, my friends bought me a huge stuffed animal I had wanted since the age of nine, along with sweet cards and even the smaller version of this stuffed dog since the timing coincided with my birthday. The first time I was having a drainage procedure done on an emergency basis over Thanksgiving, a family friend cooked and packed up an entire meal for my family and me. Obviously I couldn’t eat any of it but it was so thoughtful and appreciated. These things made my family and me feel like we were thought about and cared about.

This definitely continued on for a little while with others showing my family and me support but after so many years of dealing with inflammatory bowel disease (IBD), it has become just the norm.

It has become “Oh Marisa is in the hospital again… that’s just what she has to go through

or “yikes another surgery? Well she’s had so many I’m sure she is a pro and will be back to life before we know it.”

Point being, those of us who suffer from a chronic, invisible illness are often forgotten about or sometimes things aren’t looked at as THAT big of a deal as the years go on. Everyone is just used to the patient being sick which creates even more feelings of loneliness and isolation.

Understandably, everyone has their own life and things to deal with so when someone hears of a friend living with a chronic illness is going through something awful, it just doesn’t register the same way as it would had it been earlier on in the diagnosis process or if this same situation occurred with another loved one but was unexpected.

It is difficult for people who suffer from so much ongoing trauma like a lot of us do with our IBD.

It just becomes another hospitalization or another surgery or another test…

Sometimes people think we are so strong because of our past that we must be fine to go through it AGAIN. When the reality is, every time a person who suffers from a potentially life altering disease like Crohn’s disease or ulcerative colitis goes through a surgery, a test, an emergency room visit or even a doctors appointment, it adds new emotional layers.

I have spoke about Complex Post Traumatic Stress Disorder and how little it is spoke about or even acknowledged. This speaks to that in a very real way in my opinion. And while I don’t blame anyone for being so supportive and loving initially and then sort of fading off the grid a tad as the years go on in terms of support, I do know personally how hurtful it is. It is not anyone’s intent but it is the case and something I wanted to bring up today.

This is also the case oftentimes when a loved one passes away. At that moment and the weeks following, usually there is an outpouring of messages, flowers, cards, and people just reaching out to be there for you. Then, as time goes on, they go back to their own lives and meanwhile, that person who just lost someone is still grieving and hurting enormously.

It is the same concept as an IBDer going through surgery.

Once someone is home from the hospital, the outside world generally forgets that there still is a ton of healing that needs to be done – both physically and mentally.

If you are someone who feels similarly, I want you to know you are so far from alone. I also want you to know that nine times out of ten, it isn’t personal, even though it obviously feels that way.

Have you found this to be the case? Has it been difficult for you? Any tips/advice to help others?

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