Chronic Illness,  Invisible Illness,  Rheumatoid Arthritis

My Invisible Illness Photo Shoot

September 10, 2018 / 7 Comments

Introduction

People often remark that those of us with invisible illnesses “don’t look sick.” However, we deal with substantial physical and emotional challenges. To shed light on the often hidden side of living with chronic illness, I completed an “Invisible Illness Photo Shoot” with dear friend and phenomenal photographer Jessica Keener Photography.

Goals of the photo shoot

On the left, I am looking directly at the camera and grinning. I look energetic and healthy. On the right, I am sitting down with a serious facial expression, looking at a large array of medication bottles and syringes around me.
I have many good days, like the one on the left. I also have hard days, as shown on the right.

1. To illustrate that you cannot tell what someone is going through just by looking at them. I hope that these photos help people remember to “be kind, for everyone you meet is fighting a hard battle” (Ian MacLaren).

2. To help those who have similar invisible challenges not feel alone. I have benefited from seeing other brave chronic illness warriors share their trials and triumphs, and wish to add my contribution.

3. To visually express that life with multiple chronic illnesses contains many “good days” and “bad days.” As a positive person (my entire blog is called “The Enthusiastic Life,” after all!), I typically favor sharing photos of good days. However, I also wish to show the truth of my life, and I experience many “bad days” along with the good.

The photos are available in slideshow format as well as a traditional narrative blog format below. Please feel free to share this post or individual photos for educational reasons, but I ask that you:

  • Give credit to Jessica Keener Photography and myself (Cheryl Crow of The Enthusiastic Life).
  • Link back to this original post so that the viewer can understand the context of this project.
  • Let me know where you end up sharing these photos so I can keep track of their impact!

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Photos of the hidden medical aspects of my chronic illnesses

I am sitting cross legged on the ground with a serious facial expression, looking at an array of medication bottles and syringes which are used to manage my chronic illnesses including rheumatoid arthritis, gastroparesis, cervicalgia, whiplash and more.
Medication management. Image credit: Jessica Keener Photography.
A woman sits down in the bathroom and is pinching her thigh with her left hand while injecting herself with medication with her right hand.
Injecting one of my two weekly injected medications for rheumatoid arthritis: Orencia. Image credit: Jessica Keener Photography
At the top the following text is written: "Sometimes, managing multiple chronic illnesses feels like you're driving down the road at 35 miles and hour when out of nowhere a telephone pole slams into your car, and at other times that's literally what happens." On the top you see aphoto of a maroon Honda CRV compact SUV smashed due to the telephone pole. On the bottom you see a woman laying down in bed, grimacing.
The photo description at the top says it all. When you already have multiple chronic health issues, adding an acute health issue such as a car accident is really difficult. Image credit on the bottom: Jessica Keener Photography

Photos of the social and emotional aspects of chronic illness: my role as a friend, wife and mother

On a good day, you will see my smiling face, as shown by the top photo of myself smiling with my son and husband. The middle photo has the caption, "What you see on a bad day" and it's blank. The bottom photo says "what's actually happening on a bad day" and it shows me laying down in bed, grimacing in pain.
On good days, you will see my smiling face. I love sharing photos on my good days! However, I often don’t have the energy or interest in sharing my bad days, so they are even more hidden. What is actually happening on a bad day is shown in the photo at the bottom: usually rest, pain management, missing out on fun things in life, and isolation. Image credit: Jessica Keener Photography.
On top, my husband and I are admiring on rings on our wedding day. On the bottom, my ring is in clear focus as I inject one of my two weekly injected medications (the color of the syringe is turquoise, which almost matches my sapphire ring).
On top, my husband and I are admiring on rings on our wedding day. On the bottom, my ring is in clear focus as I inject one of my two weekly injected medications. Image credit on top: Cory Parris Photography. Image credit on bottom: Jessica Keener Photography.
There are two photos in this collage. On top, a woman lays on a couch, wearing pajamas and watching her son play with legos. On the bottom, the mother is fully dressed and sitting directly across from the child and is handing him a lego.
This composition was directly inspired by Kathy DiVincenzo’s powerful photo, taken by Danielle Fantis, of her on a good day versus bad day after postpartum depression.  Image credit: Jessica Keener Photography.
On top, my husband plays athletically with Charlie in the style I always imagined myself playing before I got sick. It is a beautiful sunny day and a strong man (my husband) is swinging our son around. On the bottom, I am laying on the couch watching charlie play with Legos.
My husband plays athletically with Charlie in the style I always imagined myself playing before I got sick. On the bottom, in contrast, is me on a “bad day.” Image credit: Jessica Keener Photography.

A small child rides on the back of a strong male, both of whom are smiling on the left and middle. On the right side of the photo, a mom (me) is looking at the two of them and smiling. On the bottom of the picture is the caption, "Mama, when your neck feels better, you can lift me again."

We see a small child placing band aids onto his mother's stomach. In the background is a poster that reads, "Some owies don't get better."
“Some owies don’t get better” – chronic, lifelong illness is really difficult to explain to small children. In this photo, Charlie helps me put band-aids on one of my injection sites for my weekly rheumatoid arthritis medication.Image credit: Jessica Keener Photography.
A woman sits on top of a box which has the label, "Baby clothes to donate." She looks at a small onesie.
It’s hard to put into words or images how difficult it was to decide whether to try to have another biological child. Image credit: Jessica Keener Photography.
On the left is a box entitled "Cheryl medical records," which lists 18 different medical specialties. On the right is a box called "Baby items to donate."
The box on the left directly led to the box on the right. Image credit: Jessica Keener Photography.
On 6 different white gauze bandages are written the letters for the words "slow healing," in what looks like blood.
In 2016, I had surgery to remove a pilonidal cyst. I experienced delayed wound healing for months afterwards. So many doctors referred to me as a “slow healer” that it became an inside joke between my husband and I.  The letters are written on the same sized bandages that my husband had to change 3 times a day for 6 months. Image credit: Jessica Keener Photography.

7 Comments

  • Mary-Beth Netzer

    August 4, 2020 at 1:38 am Reply

    I’m so glad I found you and your blog/IG/Fb/website. Thank you for sharing your story/journey and for those powerful pictures. A picture says a thousand words.

  • Jean Sullivan

    October 11, 2018 at 11:27 pm Reply

    Have been dealing with 3 autoimmune diseases since I was 17. I’m almost 67 now. It took almost 15 years to get diagnosed in the right direction. I had one child too. When she was 19 months old, I was diagnosed with cervical cancer. Just wanted to live long enough so she would remember me. Fast forward, and she is in her 30’s. I love and can relate to your blog. I just pretend (after all these years) that everything is fine. You will do fine. Support is the best thing you can get. Enjoy your son. Before you know it he will be in his 30’s!

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