Life with Crohn’s: I’m Not Sorry for Having Fun ??‍♂️

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At about the time I turned 8, I was diagnosed with debilitating Crohn’s disease and was hospitalized. During this period, I was asked to not just stay in bed but to also have some fun in the playroom with other kids also in the hospital. After playing, I would bring old magazines and coloring books back to my room to keep me company in bed. 

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The fact that I played doesn’t prove that I’m not sick.

It simply means that, aside from being sick, I had the same needs as any healthy child. With “grown-ups”, the tables are turned. In this world, when a sick person engages in anything, it is concluded that this sick person is lying about his/her situation. Sick people are often confronted by strangers who don’t even know them when they go out in public or do anything at all. The audacity of these random people who know nothing about our lives is baffling to me.

One day during a time when lately I hadn’t been doing my best, I went to my favorite amusement park; I couldn’t do much but I did post a picture of me on one of the rides since I was ecstatic to be out and about and enjoying myself sans pain. Some days later, my mom called and told me that a family friend saw my post reacted intensely. In her eyes, if I could go to an amusement park then I must not be sick enough to be hospitalized. She went as far as spreading her hurtful opinion to other friends in our neighborhood and tried to convince them that I was pulling some prank.

After speaking with my mother, I immediately blocked the so-called family friend, but her opinion on me being a “fake” stayed with me anyway, despite its lack of truth. For over a year, I grew worried anytime I felt like posting about having fun. I felt compelled to post only about how sick I was to prove to others (and myself?) that I was still sick.  I felt guilty about enjoying life to the best of my ability.  

For people that are very sick, pessimistic, close-minded individuals will always find faults in whatever we do. Some people like us can exercise while others cannot. We’re all recommended to be active in order to improve our health when possible, yet if you engage in any physical activity, it is concluded that you are not sick at all. 

In the occasion that you post pictures on social media and you look well, you are obviously not sick to people, but if you post pictures of being in the hospital or being treated, you are termed an attention seeker. They also expect you to be fine within a certain period of time because someone they know recovered in a few weeks, which means you should too. 

Social pictures of us who are seriously ill, smiling and looking healthy, deny us of the benefits we should have; and it’s disturbing. People don’t seem to want to know what’s happening behind the pictures they see. Sometimes, it is the first time in a number of weeks that a sick person had to do something fun for a change. They look at your pictures and suddenly they know how your life is going.

These people have no idea that we’re often at home or undergoing treatment because we have incurable diseases. They don’t understand that we’re in so much pain that we can’t work on a full-time basis, and therefore, then we should miss out on fun, social media and social interactions as well? Will it help us? The life of a sick person is hard, to say the least, and often harder when being judged.  

I have picked up a habit of going numb when judged by people. Most of the time, I don’t bother trying to explain myself or my actions. They have concluded what they have and I have no interest in wasting my time to make them think otherwise. I don’t give explanations or apologies when stepping out of my house occasionally. Anyone with the notion that my needs are reduced all because I am sick is not getting any of my attention.

To those who are seriously ill, having a supportive network of friends (and hopefully family) will go a long way in improving your health. Ignore those who are skeptical. They have no place in your lives. Their opinions are irrelevant. We do not walk in their shoes and they do not walk in ours. 

If you want to pick up groceries, get your hair styled, give your kid a piggy-back ride –  you are not sick because others feel you don’t look sick. 

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