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:
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.
I have found living with an invisible illness to be both a blessing and a curse.
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.
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.
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.