By Jill Wussow

It’s May again – Lyme Disease Awareness Month. I want to focus this year on the fact that this unforgiving disease is often a hidden one.

Those of us with chronic Lyme are fighting every single day and are regularly putting on a disguise, an illusion where we often come across as functioning members of society. Operational individuals (robots?) in our own home.

Beneath the surface, you cannot see or feel our multitude of symptoms that can vary hour to hour.

Some of mine include: 

Debilitating neuropathy and sensory issues, hearing loss, memory issues, chronic pain, joint pain, migraines/headaches, muscle loss, hyperacusis, brain fog, air hunger, twitches + tremors, tinnitus + ear pain, word block, dizziness, depersonalization + derealization, nerve pain, depression, crushing fatigue, inflammation, temporary dyslexia, swollen lymph nodes, random rashes, water + other allergies, chemical sensitivities, chest pain, anxiety, numbness, skin crawling, nausea, to name a few…

But, I don’t look sick

Receiving comments like “You look healthier/better/so good!” while often said with good intentions, aren’t really helpful.

Our bodies and minds are constantly fighting for survival, there is ongoing suffering on some level, and we feel like a truck ran us over most of the time.

Being told we look good, better, or healthy, feels undermining to our daily reality. Good lighting, a smile, clothes that aren’t pajamas, a bit of makeup? These things don’t equate to huge strides in healing, unfortunately.

Sometimes, I wish I looked how I felt. It would be easier than explaining and maybe the general public (and medical practitioners) would take chronic Lyme more seriously, maybe they would understand our disease even a little more.

Perhaps funding and public outreach and media would get more traction if we looked how we felt.

But we don’t look sick

While I have (thankfully) made progress in treatment, and I do have more good days than I used to, there are still some days that brushing my teeth takes every ounce of energy that I can muster.

I am often in my pajamas for days in a row without changing, never looking in the mirror because the person staring back at me is someone I have a hard time recognizing, and I don’t really appreciate them intruding in my space.

While you can’t see the physical issues listed above, you absolutely cannot see the mental and emotional toll the last few years have taken on me.

Because I don’t look sick

Lyme is called “The Great Imitator.” Perhaps its victims are “The Great Deceivers,” for fooling so many with our appearances, while under our skin we are being eaten alive with this savage disease. 

(Big thanks and love again this year to Rachael Caringella, for her incredible help with this photo!)

Jill Wussow is a wildlife photographer in Northern New Mexico. Click here for her website, Instagram page, and Lyme-specific Instagram stories.