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No, I’m Not “Used to It”

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?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • thedancingcrohnie moderator
    9 months ago

    Yes, I can relate to this. It is hard when you have an outpouring of love in the beginning and then that withers away but you are still suffering. Like you mention, it is the same when others lose loved ones. Unfortunately, this is just the way life is, and so for that, I feel like it is important to cling to your inner circle. The large outpouring of love, will have people who will drop off and wither away, naturally, because they go back to their lives. So cling to your inner circle, because they will be by your side throughout it all.

    Always dancing,
    Elizabeth (team member)

  • 2 years ago

    I understand what you are saying but I have to say that my reactions over the years have changed. Iused to feel this way but i now feel that my spouse is the one feeling lonely and forgotten.she has neen there every step of the way through all of this hell with me so in many ways she is suffering along with me.together we will go forward.as far as friends and family go they call and check on us occasionally.i dont expect them to be there at every event in my life as they have their own to live but i know they care and that’s all that counts.thanks for letting me add my comment

  • Kelly Dabel moderator
    2 years ago

    Thank you for sharing benn. We appreciate you sharing your take on this. Thank you for being part of our community. Kelly, InflammatoryBowelDisease.net Team Member

  • lilsnowbunny
    2 years ago

    Yup. Just got home from the hospital yesterday. I’ve had 4 surgeries in the last 2 years, with dozens more before these episodes. I’ve had to learn to accept that people who aren’t touched by this kind of suffering have no idea, and possibly, don’t want to know. Everyone has their own problems. Many people don’t want to take on more, or, they truly have no idea how much it means to us when they reach out to us, even the tiniest bit. They want me to call them, but much of the time, I am just too I’ll to do this, or I feel funny asking for help constantly. It’s an issue I deal with continuously. Ultimately, I end up very isolated, and try to make the best of my situation. A friend in need is a friend indeed! Many people have no idea what that means.

  • Kelly Dabel moderator
    2 years ago

    Thank you for commenting lisnowbunny. Glad to hear that you are out of the hospital now. We appreciate you being part of our community. Kelly, Crohnsdisease.net

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