Why I'm Sharing Photos of My Life With Invisible Illness (and Not Just the 'Good Days')


Healthline recently teamed up with the U.S. Pain Foundation on a public awareness campaign called #MakeItVisible, to raise awareness and understanding of those suffering from invisible illness. This is a public campaign, a chance for individuals to show the world the reality of living with invisible illness and offer a chance for others to begin to understand what life with invisible illnesses and pain is truly like. As I patient-advocate, I felt compelled to share some photos from my life over the past 11 years, and not just pictures of my “good days.”

Despite the call for authenticity and attempts to raise awareness, it still took me several hours to look through the few photos I do have of me truly in the midst of experiencing my illnesses. The most important part of this campaign was truth and there was looking for my “best” bad day pictures. I then began looking for the picture that would truly bring awareness, education, and understanding of the life that I lead.

michaela oconnor at doctors appointment with wires on her head

michaela oconnor sitting a doctors office with doctor behind her

michaela oconnor lying in hospital bed

michaela oconnor getting treatment wearing a device on her head

michaela oconnor waving in a wheelchair

Attempting to share the most intimate, difficult moments of my life with the world left me feeling uneasy and extremely vulnerable. I wrote a long introduction message about the meaning behind the post and uploaded the photos. I included a few photos of my “good days” to show the drastic difference between the days I am able to hide behind a smile on my face and the days when the pain and illnesses are too much to hide. I must have looked over the post for 20 minutes before clicking post, preparing for the possibility of both supportive, positive comments and negative, hurtful comments.

I am not ashamed or embarrassed of my life or my illnesses, but I have to admit I was extremely anxious immediately after my post. I felt vulnerable and exposed while also feeling this overwhelming sense of calm and freedom. I had shared the most difficult aspects of my life, the parts that even patient advocates don’t share, and I was happy that I had. The post reminded me of the things I had gone through, encouraged me to remain steadfast and strong, and gave me a chance to share a side of myself most people don’t see: the warrior in me.

If you feel so inclined, share your story or a photo along with the hashtag #MakeItVisible and make it public, I truly hope it brings you as much freedom and understanding as it brought me.

We want to hear your story. Become a Mighty contributor here.

TOPICS
JOIN THE CONVERSATION

Related to Chronic Pain

To the People Who Assume I’ve ‘Stolen’ My Disability Parking Permit

I can walk, but I can’t walk very far, and it’s always with pain and fatigue. I can stand, just not for very long. I use a mobility scooter — a small version of an electric wheelchair — and walking sticks.  Limited as my mobility is, I’m still made to feel like a faker. I don’t look sick [...]

When a Friend’s Brave Act for My Son Knocked the Wind Out of Me

My son, Caleb, is a looker. He’s only 5 years old, but at 36 pounds and nine surgeries, he’s a real head turner. That wasn’t always the case (says his mom who doesn’t believe a word of that). Even at 2 pounds soaking wet and not at all ready to brave the world, he was [...]

4 Ways to Be a Good Friend to Someone Dealing With a Health Issue

As I learn how to navigate this new pathway of living with disease, I’m realizing some folks naturally seem to know how to step up and be a friend in this difficult situation, while others mean well but struggle to know how best to help and be supportive. So here are four things you can do [...]

To the Parents Whose Child Has Just Been Prescribed a Restricted Diet

It feels so hard… at first. It feels like the purest definition of overwhelming because it is overwhelming: the beginning of a life lived without what may feel like one of the foundational foods of your family’s diet. Maybe your child has just been diagnosed with a food allergy. Maybe it’s celiac disease, lactose intolerance or [...]