Tuesday, January 27, 2015

Invisible Illness

*Baron & Budd Law Firm published this blog here:

As I was scrolling through my Facebook news feed, I came across a post from my friend Cheri:

I was just told I need to take down my Facebook profile picture because I don't look sick and people might not think I'm actually sick.”

It is a sad fact that when you suffer from an invisible illness, people make judgments about your appearance and capabilities based on how you look. In their minds, if you don't look sick, you're not sick. That is a damaging assumption to make.

When you “don't look sick”, it's hard to explain invisible illness and Fluoroquinolone Toxicity to someone. Even when you explain it, you're still viewed with skepticism or a blank stare. The lack of understanding can lead to feeling isolated. Not only do you deal with an invisible illness, you start to feel invisible too because those around you can't- or won't- understand.

My friend Cheri Haddon, 26, from Conyers, Georgia took Cipro in 2011 for a urinary tract infection. She suffered immediate adverse reactions to it and has been disabled since then. When holidays come around, she cannot enjoy being with her family because she is so food and chemically sensitive. She can't eat the food that her healthy relatives can eat. She becomes sick for months just smelling someone's perfume or shampoo. She has endured insensitive comments from people around her because on the outside, Cheri “looks fine”, while inside, her body is screaming in pain and rebelling against her environment.

I took Levaquin in 2006 for a suspected sinus infection. Since then I have ruptured 9 tendons, had spinal surgery, developed peripheral neuropathy, tinnitus, vision changes, seizures, gastric problems, a neurodegenerative disorder, muscle wasting, arrhythmia,  brain fog, cognitive dysfunction, tremors, and I was diagnosed with another life threatening disease in November.

Looking at Cheri's photos, as well as mine, you'll see us smiling, being social with friends and family. But those photos don't tell the complete story. Hidden behind the smiles is body-wide pain, brain fog, nausea, dizziness, neuropathy, flaring tendons, fluctuating heart rate, and much more that you can't see. For the one second it took to take the picture, we manage to paint a smile on our face, masking what is really going on behind those smiles. A photo cannot possibly open a window into what we are feeling like on the inside, and what you don't see afterward is that it could take us days, weeks, or longer to recover from whatever was going on in that photo.

There is a photo of me on Facebook and in it my husband and I are having lunch with 3 other friends.

What you see:
  • I am smiling.
  • My hair is done.
  • I am wearing makeup.
  • I am wearing a nice sweater.
  • I'm just another diner in a restaurant out with her friends, cracking jokes, listening to what her friends have been up to.

What you don't see:
  • I am wearing enough concealer under my eyes that would rival Tammy Faye Baker to cover the dark circles under my eyes because insomnia has kept me up for 3 consecutive nights.
  • The tremors in my hands made me drop my fork 6 times since I arrived.
  • All of my joints are screaming in pain and the morphine I took before I left the house isn't touching the pain.
  • My left foot is numb and my right foot feels like I stepped on hot thumbtacks.
  • My cognitive function is poor and when I ordered my lunch, I switched words and the waitress didn't understand what I was trying to say.
  • I am taking slow deep breaths in an attempt to calm my heart rate from arrhythmia.
  • I am in panic mode because I couldn't remember if I took my seizure medicine that morning.
  • Our table is near the table of the elderly gentleman who made a snide comment to me as I walked up the ramp to the restaurant because I can't do steps and he could.
  • I would be bed-ridden to close to a week after the photo was taken.

There is a photo of Cheri on Facebook with her mom and her dog on her mother's birthday.

What you see:
  • She is smiling.
  • She is wearing a pretty sweater.
  • She looks happy.

What you don't see:
  • She is in pain.
  • She is nauseous.
  • She took her sunglasses off in the house long enough to take the photo and her eyes hurt because she is sensitive to light.
  • She is having brain fog.
  • This was the first time she was able to wear “real clothes” in 3 weeks because daily activities can be difficult for her.
  • She was bed-ridden after the photo was taken.

Cheri's post about someone telling her to take down her profile picture because people won't believe that she is sick sums up what we face, even from people in our close circles. It shouldn't take a photo of us looking like we are on our death bed to convince people that we are, in fact, suffering from a terrible illness.

They say that a picture speaks a thousand words. I think it depends on who is reading it.

To someone who isn't chronically ill, Cheri's picture tells the story of a healthy-looking young woman bonding with her mother. A healthy person might say “Cheri, you look great, I'm glad you're all better”.

When I look at it, I can see the hallmark squint in her eyes which speak of pain from light sensitivity. I see that she is swallowing her pain. I see that it took a lot for her to get dressed and smile and participate so her mother could have a nice birthday. I see that she feels alone because she can't eat the same foods that her family can, and I see that she can't be in an environment that non-sick people can be in because she is so sensitive to chemicals, new furniture smells, perfume, etc. I see in the one second it took to take that photo that she is silently suffering. I see it because my smile in my own photos tell the same story of being chronically ill with an invisible illness.

In the one second it took to take the photographs of us, we got to look just like normal people, with normal lives, who are not sick with an invisible illness.

That's the difficult part of invisible illness. By outward appearances, you can't tell how much someone is suffering. Asking someone to take down a photo because it makes it look like you're not sick negates what we are going through. It implies that we should be posting pictures of ourselves crying, screaming, vomiting, gasping for breath, in the throes of a seizure, or limping so people believe that we have an illness and that we are struggling.

You can't see air, yet we believe you are breathing. You can't see pain, yet we believe you are hurting. So why is it so hard to believe that we are chronically ill with an invisible illness and we are just trying to survive the only way we know how?

The conversation about chronic and invisible illness needs to change. With invisible illness, not everything is as it appears.

Rachel Brummert
President/Executive Director
Quinolone Vigilance Foundation

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