In general, I have felt really alone on my journey with chronic illness. This isn't because I didn't have a lot of support and friends along the way. It is because living with illness is isolating--especially if it is an "invisible" illness. Invisible illnesses are those that others cannot see because you don't look sick on the "outside." I always looked healthy and "put together." I didn't wear any casts or bandages. Despite the suffering that I carried inside of me, I still upheld my responsibilities, and I was a successful woman. Society still believes that if you cannot see something with your own two eyes, it must not exist. I didn't meet the stereotype of a sick woman: I looked too healthy and did too much to really be sick. No one saw the nights I didn't sleep as I keeled over the side of my bed with pain. No one knew of the angst I carried as I had to call my boss and let her know that I could not make it to work because I was sick.
My vacation time consisted of working extra jobs to pay for medical bills and having medical procedures so I didn't have to take additional time off work. There were hundreds of events I couldn't attend throughout my lifetime because I was not well--I missed out on the joys of youth and young adulthood because of illness. Instead I was consumed with physician appointments and emergency room visits. Sometimes I thought I had a true friend and then I heard their sarcastic comments about how I must be "faking" sick to get out of school, because I obviously looked normal. I lost friendships because I was vulnerable and I didn't fit in. My restricted diet, allergies, regimented schedule, and susceptibility to illness made socializing challenging and my peers were bewildered as to how I could be sick again and again. I got tired of having to cancel because I was sick, tired of explaining and justifying myself, tired of the judgments, so I withdrew from my peers and spent most of my free time playing the piano, dancing, and enjoying my pets.
All of these factors contributed to my feelings of isolation but there was one thing that made the isolation unbearable--NO ONE TALKED ABOUT WHAT IT WAS LIKE TO HAVE AN ILLNESS. This includes both physical and emotional. No one wanted to talk about anxiety or depression any more than they wanted to talk about bowel problems or chronic pain.
I am certain I wasn't the only young woman struggling with chronic illness and emotional trauma, but it seemed this way because it wasn't a topic of conversation. There is so much shame around illness that for many of us we keep our stories to ourselves. I had a lot of internal conflict because I yearned to feel "normal" and/or "whole," and there were times the invisibility of my illness allowed me to pretend that I wasn't suffering, yet I desperately needed someone in my life to relate to my experiences because they, too, had been there. I didn't know how to connect with others in this way. I was scared to expose my vulnerabilities. So because illness--physical and emotional--was not a topic of conversation, I felt more alone than I really was. In fact, there were hundreds of people going through the same thing as me but we were all suffering silently.
Now I am an adult and I have had many years of living with chronic illness--physical and emotional. When I made a decision that it was time to truly help others struggling with autoimmune disease, I made a pact that my number one mission would be honesty.
I am telling my story because I want to share those aspects of my story that I wished others would have shared with me--the behind the scenes of illness. Illness should not remain invisible, and I want to share with others those aspects of illness that no one wants to talk about--the parts of illness that are truly more common than we realize and that make all of us HUMAN. I also want to allow vulnerability to be accepted and part of healing. The only way healing takes place is through this type of honest vulnerability with oneself and with others. So here I am--website, photos, thoughts, story, and all. I hope that my story and what you find within this website will make you feel less alone and that we can support each other's healing by sharing our stories. Strength comes from knowing there are many things that make us unique but just as many things that make us the same.