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Invisible Illness: A Blessing and a Curse

We have discussed living with an invisible illness here before, but for anyone who may not understand what I am referring to, here’s what I mean by this term:

What’s an invisible illness?

An invisible illness is any health issue that is not readily seen or understood by those who are not living with it. Crohn’s disease and ulcerative colitis are both invisible illnesses because so often individuals dealing with these diseases do not look sick to others, however, they may be dealing with intense pain, malnutrition, exhaustion, bloody diarrhea and a number of other issues outside of their digestive tract. Of course, there are times that invisible illnesses may become more visible due to weight loss, reactions to medications, or other factors, but much of the time the pain and struggle is internal. There are dozens of other examples of invisible illness out there, such as arthritis, fibromyalgia, lupus, depression, just to name a few.

Why living with an invisible illness is both a blessing and a curse for me

Crohn’s as a blessing

An invisible illness can be a blessing because I do not often have to deal with other people either staring or avoiding eye contact, giving looks of pity, or asking rude or inappropriate questions about my disease. It is nice to be able to walk out the door and not have the entire world know what I am dealing with on a daily basis. At times, I am even able to forget about what I have been through or what I am going through at the moment. I have never wanted to be defined by my disease, and the fact that it is not usually visible to others can help make that goal more attainable.

However, there is also a downside to having an invisible illness.

Crohn’s as a curse

Not being taken seriously, for starters. I have been called out many times for sitting by myself at a party, and even when I try to explain that I’m not feeling well or I’m doing my best, they often don’t get it. To the outside world, we may look completely healthy and, therefore, friends, family and co-workers may not understand why we are not able to join in an activity because we’re too exhausted or are dealing with a lot of pain at that time. There’s also just a lack of empathy from others. People don’t check in to make sure I am doing alright, they don’t offer to help with something I may not have the energy to do, they don’t see that I might be struggling just to make it through the day.

I have lived with Crohn’s disease since I was a kid, so over the years I have learned how to smile through the pain and to put aside what I am feeling. I would tell myself that if I didn’t laugh and smile when I was feeling bad then I would basically never laugh or smile. I am also one who will try to do my hair and makeup so I don’t look as sick as I feel, so others assume I’m not dealing with anything major. But there have been times where I have purposefully not attempted to look healthier, or have made myself sound a little more pathetic just so others can have something visible to see and to understand in some capacity.

Raising awareness of invisible illnesses

This is why raising awareness of these and other invisible illnesses is so important. In doing so, we can begin to help others grasp even just a small part of what we deal with on a daily basis and hopefully bring them to a place of understanding and empathy.

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


    4 weeks ago

    When I was diagnosed with Crohns, I suffered the worst flare of my life. I lost about 40 lbs in a month. Luckily I weighed 250 lbs at the time and could lose some weight, but not that fast! I worked in an office about 30 miles away from my supervisor. I had let my co-workers know I was having a health issue. One day I had to go to the main office for staff meeting. Most people saw me and immediately talked about how good I looked! My supervisor, however, looked at me and asked if I needed to go to the hospital. He was the only one to realize how sick I was. If I had heard another person say I looked so good I might have punched them in the mouth.

  • ShelbyComito moderator
    4 weeks ago

    I hear you, @dougute. Although I think they’re meant out of good intentions, comments like that can make one feel all the more isolated and misunderstood. I’m so glad to hear that you had a supervisor who was able to see past the exterior and understand what was going on beneath the surface. Thank you so much for sharing your experience. – Shelby, Team Member

  • thedancingcrohnie moderator
    1 year ago

    I can so relate. I too would sometimes not put on make up so people can see my pale skin and bags under my eyes, so they would just “get it.” And of course, most of the time people would be so concerned. But it is a double-edged sword having an invisible illness, for all the reasons you state. And I agree, the best we can do is continue to raise awareness so that people will understand more.

    Always dancing,
    Elizabeth (team member)

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