To the People Who Tell Me, 'You're Doing a Lot So You Must Be Better'

To those of you who tell me, “Well, you look fine” or “You have been doing a lot so you must be feeling better,” here’s the truth: I have chronic illnesses, and they never go away. They’re always drawing some type of attention to themselves at least several times a day.

Kirstin Larkin

Even though I “look fine” on the outside, it doesn’t mean I’m fine on the inside. If you look past the smile that’s usually always plastered on my face and really look into my eyes, you’ll see I’m not OK. Am I hunched over or trying to fold my body so I’m bracing myself? If so, my pain is off the charts. Is my speech slurred and I seem pretty foggy? Yes? Then my blood is not moving up to my brain quickly enough and my brain is depleted of oxygen. Am I grabbing my stomach? If so, my stomach is angry it has to figure out how to digest the food sitting in it.

All of these symptoms and many more are ones that can’t be seen in a photograph. Just because I did something fun or pleasurable doesn’t mean I’m well and I didn’t pay for that activity later. A photo posted on social media doesn’t tell the entire story. It only captured one second of that day. Looks can easily fool you when the person is facing challenges from invisible illnesses.

Kirstin Larkin
Kristin outdoors.

When I hear the line, “You’re doing a lot so you must be feeling better,” a strong wave of anger floods my body, and I just want to scream back, “But you have no idea!” I know the person means well by their comment, but it’s still very hurtful. It reminds me how alone I really am in this constant battle against my own body and reinforces how others really don’t understand the complexity of my situation and the depth of what I endure each day.

Even though I’m battling against my own body, I still love to travel and seek adventure. I may appear to take many adventures for someone with a chronic illness, but that doesn’t mean I’m well or healed. I have seen more challenging days than I can count. Days where getting off the sofa isn’t an option and neither is being independent, like changing my own clothes. I have had more days of excruciating pain than I desire, but this is my life. I have learned to accept it and changed many of my habits in order to manage my symptoms, and I choose to live life to the fullest despite the heavy weight of having several chronic illnesses.

choose to live. I choose to travel. I choose to love. I choose to accept my life as it is and continue on living.

Rarely do I post photos showing the reality of my everyday life because I choose not to focus on my challenges. Instead, I choose to share my achievements and joy in the hope to inspire others to live their lives to the fullest. So I ask you to please keep in mind that there’s always more to the story behind that bright smile in a photo.

Follow this journey on Illest Explorations.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Find this story helpful? Share it with someone you care about.

Related to Chronic Illness

21 Secrets People With Invisible Illnesses Wish They Could Reveal to the World

Along with physical symptoms, those with “invisible” illnesses must deal with another layer of challenges: the outsiders who don’t understand or believe their illness because it can’t be seen. We teamed up with PostSecret to collect the secrets of people living with invisible illnesses and discover what they wish others knew about their lives. We believe [...]

To My Significant Other: This Is What I Need in a Partner as Someone With Chronic Illness

I hesitate to use a personal pronoun and say that I speak on behalf of the entire chronic illness community. We are a varied group with many differences but one major similarity — we are perpetually sick. While there are few topics that I feel informed enough to speak so broadly for all of us, [...]

How Taylor Swift's Music Helps Me Through Ups and Downs With Chronic Illness

I have a really big confession everyone. I am a huge Taylor Swift fan. It doesn’t matter if I’m riding around town in my car, or simply winding down after a long day, you can almost always be sure that Taylor Swift and her music are close by my side. Whether I’m  singing along to the lyrics of [...]

When a Group of Teenagers Wrote Poetry About Coping With Chronic Illness

Recently, I was talking with a friend about how to balance my self-care and advocacy efforts. There are so many important causes we’re all invested in. Sometimes we forget to take care of ourselves, or when we finally do give ourselves attention, we don’t have the skills or knowledge about how best to cope with challenging situations or tough [...]