Face of a Chronic Illness

I'd like to share this Facebook post from my daughter...for anyone who has, or cares for someone with a chronic illness, you may relate.

This is what someone looks like living life with a chronic illness. Chronic illnesses are conditions or diseases that can be neither prevented, nor generally ever cured. Many chronic illnesses are invisible disabilities, meaning they are conditions that create significant challenges in daily every day life, but are not easily apparent and sometimes not even seen to anyone on the outside.

My parents told me when I was two years old I fell off the bed. They felt a bump on my leg afterwards, and brought me to the doctor. It was then when I was diagnosed with Multiple Heredity Exostoses. MHE is a rare, chronic, painful disease that is characterized by benign bone tumors. It’s generally hereditary, as the name states, however in my case, it is an even rarer mutation as I’m the first generation to have it. I can’t remember a time I HAVEN’T BEEN in pain. You can’t tell by this picture, as this was taken after I had 22 tumors removed from my body, 21 from my legs and 1 from my hand, but it’s a deforming condition as well. Growing up, I used to have golf balls sticking out of my knees. I was an extremely fragile child: if I were hit hard enough (as in falling or running into the metal rods on the play ground) I’d get another tumor on the impact site. If I tried to run in gym or on the playground, muscles, tendons, and nerves would get stuck on the tumors in my knees. My legs would lock until the tissue was unstuck. I would have to basically pull the muscle off of it myself. I was so fragile that the other kids were scared of me. I remember when I told my “best friend” in fourth grade that the reason I couldn’t take PE was because I had tumors, she screamed “Ew get your cancer away from me!”, in front of the whole class. I was basically ostracized during my entire school years.

I could never understand why people are so hard on people with chronic illnesses, but then I thought maybe it’s because they simply just don’t know someone is suffering in silence. The best compliment someone can give me has nothing to do with my appearance, but that they didn’t know I had anything wrong with me. People who go through life living with a chronic illness have a double life. They have the life they want people to see, the life that’s going through the motions of daily normal life—going to work, having a social life, a façade really. The real life is the one they don’t want people to know—the struggle to get out of bed, the amount of sheer determination it takes to go through a full day of work. The constant inner pep talks, inner monologues about different motivations to keep going. The guilt of cancelling plans last minute because your body can’t handle anymore, and then the shame of just stopping making plans overall because you know you’ll have to cancel anyway, your body just can’t handle anything more. The constant worry that you’re keeping your chin up high and your voice strong and clear when you just get back bad test results. Those living with chronic conditions have become so accustomed to living the double life that it appears to the world as one, leading to the ignorance aforementioned: they just can’t tell. 

For me personally, the fact that I can go to work is a blessing and nothing I would take for granted. I have over 100 tumors through out my body; I do not have to work a day in my life. I could collect a check and never have to get off the couch to earn it. I don’t have to work, but I want to. That’s why for me, the most hurtful thing someone can do is imply that I’m lazy. The things “normal” people see as a chore, I—along with many others going through life with a chronic illness—see as a privilege. I’m on deck for my fourth surgery and the most upsetting part about that isn’t the amount of work that needs to be done, reconstructive, and tumor removal. It’s the post op recovery that upsets me most, because I will be forced to stay home and miss work.

I only write this to offer perspective. I don’t write this for your sympathy and pity. My ultimate goal in life is to be “important enough” that people will care. Don’t get me wrong, I know people care, but I’d like to be the person a little girl with bumps all over her body can look to and know she can do what ever she puts her mind to, no matter what the bullies and doctors say. I’d like to be the person a worried mother can look to and know MHE, and ANY disabling illness, is not a death sentence, and will not stop their child from living a happy and fulfilled life. I’d like to be the inspiration that I never had, and that can only be achieved by me opening up and telling my story.

Marie