What you probably see when you look at me is a normal, healthy 24 year-old. What you probably don’t see is someone living with multiple chronic diseases. When I was 16 years old I was diagnosed with Crohn’s Disease and Arthritis, and shortly after diagnosed with Avascular Necrosis. These conditions can be life-threatening and have a severe impact on quality of life.
While I’m lucky to currently be in remission from Crohn’s Disease and Arthritis (for the most part) and be able to manage my Avascular Necrosis symptoms, I used to be very, very ill. During this time I realized the majority of people could only see me from the outside, and couldn’t see the battle raging inside my body. Here’s what you didn’t know about life with multiple chronic diseases:
Every single day is a constant battle—even the smallest of tasks like getting out of bed become monumental obstacles! During a flare-up, your body is literally at war with itself, and your body pays the price. Getting ready, going to school, going to work, cooking dinner, etc., — normal tasks become impossible missions for people like me living with severe invisible illnesses.
Once you are somewhere like school or work, you’re beholden to the bathroom at your body’s will—you have no choice. The flare up causes severe pain that ravage your insides which makes it hard to focus on school and at work. It’s almost impossible to focus on any task which translates into poor performances. In addition, many medications can cause mental fogginess which makes it that much tougher to focus. Unless you have experienced it, you have no idea how hard it is to concentrate when your body is at war with itself. The next time someone at school or work tells you they have an invisible illness; you better give them some major props!
Your social life becomes almost non-existent. Going out and having fun with friends seems impossible. Not only does being sick make you tired and cranky, but many medications make you even more fatigued, grouchy, and even a little crazy. It’s common for people with invisible illnesses to be anemic which literally saps the life out of you, and that makes the energy and effort required to go out seem impossible to gather. Even if you do make it out with friends, you’ll spend most of the time in the bathroom wishing you were at the comforts of home. To make things even worse, spending all that energy and effort going out with friends will exacerbate your flare up—it’s a lose-lose situation.
People can be very judgmental. Luckily, the vast majority of people are very accommodating and supportive. However, the few people that decide to make mean remarks like, “You’re faking it”, or that, “You’re being a wimp” really hurt. Just because you can’t see it, doesn’t mean it’s not there. It’s hard being a young adult and having to use a handicap pass for parking so that you can even make it inside a store without dying, but then getting heckled and yelled at by people who think you are faking and abusing the system makes it exponentially worse. To have a professor in school think you don’t really have to use the restroom and that it’s not an emergency is very hurtful and painful—maybe if they could see what was happening on the inside it’d be a different story.
Your body gets beat up on the inside and it starts to show on the outside. It’s very common with many invisible illnesses to get symptoms that appear on the outside of your body, some symptoms include: Acne, cysts, hair loss, moon face, water retention, weight gain/loss, and etc., just to name a few. These unwanted symptoms will lower anyone’s self-esteem and make life that much more difficult.
You become very thankful for all the love and support you get from your friends, family, neighbors, and even random strangers. The smallest acts of kindness like someone just asking how your day is going or even someone telling you that you are looking good can make all the difference in your day. You become thankful for everyday and for the possibility of one day getting better. You realize how lucky you are to have doctors and nurses working around the clock to help you get healthier and back to normal. As you get better, you have the desire to help others who are struggling as you once were. You realize that even though living with invisible illnesses is excruciatingly hard, it has made you a stronger and better person.