How to Make an Invisible Disability Visible

Most facial pain conditions are invisible so it seems appropriate that Invisible Disability Week is slap bang in the middle of Facial Pain Awareness Month. Many facial pain sufferers say that they think their family and friends might understand and have more empathy if their pain could be seen. So, is there a way to make facial pain more visual? Is there a way to make any invisible disability visible?

Invisible Disability Awareness Week
Oct 17 – 23

Photo of me, smiling. Next to be is white text on a dark blue background explaining that millions of people live with an invisible disability

How I Make My Invisible Disability Visible

Awareness is about helping other people to understand our conditions and sometimes that means getting creative to try to make an invisible disability visible.

Language and images can help to do this.

When my facial pain is at its worst, it stabs and burns and aches. It feels bruised as though my face has been kicked by a horse. My head feels as though it’s trapped in a vice. Meanwhile, a prehistoric dentist is trying to extract some of my teeth without using an anaesthetic. He’s twisting and pulling my teeth with a set of rusty old pliers. By his side, his assistant is slicing through my gum, up through my cheek to my eye socket.

I realise that is a pretty graphic description which might have made people squirm. In some respects, I’m quite happy that my trigeminal neuralgia is invisible. I really don’t want it to look how it feels. But hopefully, my description helps to make my invisible disability visible.

For Trigeminal Neuralgia Awareness Day on the 7th of October, I drew the trigeminal nerves onto a photograph of my face. Although it doesn’t show the pain, it helps people to see how much of the face is affected.

Titled the Trigeminal Nerve. A photo of me with the trigeminal nerves drawn on one side of my face.

Facial Pain is an Invisible Disability – We Need to Make it Visible

Using words and images can be effective in helping people to understand our pain. If we describe an invisible disability well enough, we can make it visible.

Here are some more stories from facial pain sufferers. I’m sure that their words will make this disability visible.

“Stabbing Pain Out of Nowhere”

Morgan Jones had pain at the very young age of three. At the age of 25, she was diagnosed with trigeminal neuropathy. Morgan has never shared her story before because she didn’t feel she had enough courage. But now, she feels that it’s the right time.

“I was three and living in Braidwood, Illinois when I started having pain. It hurt to brush my teeth so I kept telling my mom and dad. It was so painful that I refused to brush them. We went to so many dentists but they couldn’t find anything wrong.

In 4th grade my mom passed away. Then in sixth grade my pain got worse. I had to get all my teeth cut out because they thought tooth decay was causing the pain. I had to walk around school with no teeth. Kids were so mean calling me toothless freak. Nobody would sit with me at lunch. People pointed and laughed at me. The girls said they were only my friends because they felt sorry for me. I went without teeth for 4 years.

Then in my freshman year of high school, I got fake teeth. People started acting nice around me. My dad met a girl online and I moved to New Jersey in December of my freshman year.

My pain came back again 4 years later. I went to a surgeon here to see if my bottom implants were causing the pain and he said my old surgeon in Illinois put them on the wrong spot so I got them to take them out.

Then I was in pain again and I was in bed for three weeks. I had no energy, I started shaking and I kept crying. My dentist here diagnosed me with trigeminal neuralgia.

I’m on so many medications, 4 pills at night and morning. I’m always tired. When I am in pain, I just don’t feel like myself and my friends say my mood changes. I am now 25 and in January, the stabbing pain started again. I’m back and fourth on medical leave. I work at Amazon and I am thankful they are patient with me.

I hoped to have a microvascular decompression surgery (MVD), but the surgeon told me that I do not have trigeminal neuralgia. He said I’d been misdiagnosed and he diagnosed me with trigeminal neuropathy.”

“Shock After Shock After Shock”

Anne was in her early thirties when her pain first began. She has trigeminal and glossopharyngeal neuralgia.

“My life changed when I was in my early thirties. I had a career and a partner. Then I started getting horrific debilitating facial pain and life changed. The pain started one night while I was brushing my teeth. It was horrifying. I had felt nothing like it in my life. Electric shock after shock after shock. I fell to my knees in pain clutching my head.

My partner took me to ER but they sent me home. They could see nothing wrong and treated me like a drug seeker. The shocks calmed down but I had continuous burning pain throughout my mouth and cheek. The next morning, I was too scared to put a toothbrush in my mouth. I had my coffee as usual and wham! It started again.

I got in to see a neuro and he told me right away it was trigeminal neuralgia and prescribed some meds. As the years went on, the constant pain got worse. I also developed glossopharyngeal neuralgia so had the same horrific shocking pain in my throat.

I’m not a candidate for surgery apparently so I’m on several types of meds. This thing has taken over my life. I couldn’t work so my career ended abruptly. And when that went, my partner did too. He didn’t understand why I was complaining about it so much. One time, he said I was exaggerating. He eventually said that he couldn’t handle my pain so he left. Lucky him. I don’t get a choice.”

“A Pained Life”

Carol Levy was 26 when she developed trigeminal neuralgia.

Carol had pioneering surgery to treat her trigeminal neuralgia which, unfortunately, resulted in complications. She developed deafferentation pain (anaesthesia dolorosa) and has had severe problems ever since.

Carol has created videos in the hope of achieving better facial pain awareness. She’s used her words to try to make her invisible disability visible. Please click here to watch.

She has also written a book about her experience called A Pained Life. Her book can be found in the USA by clicking on this link or in the UK using this link

Carol also runs a Facebook support group for women who live with pain.

Many People Live With Other Health Conditions

I often blog about my other health conditions. It’s difficult to deal with one health issue at a time, but when you need to cope with a combination of conditions, life can become extremely difficult.

“This Pain is Extreme, Exhausting and Debilitating”

Jen has trigeminal neuralgia, occipital neuralgia and other painful medical conditions including mitochondrial myopathy, dystonia, gastroparesis, polycystic kidney disease, osteoarthritis and chronic neuropathy from back surgery to remove a schwannoma.

She started having facial pain when she was 38 years old and was diagnosed a couple of months later, just shy of her 39th birthday.

“I had my 3rd jaw surgery in April 2021. I woke up from that surgery with the entire right side of my face numb to touch but burning constantly. Shortly after, some feeling came back but with that, came this explosive pain in my cheekbone, behind my eye, and in my temple from the lightest of touch or disturbance. It could start if a hair could brushed my face, my husband kissed my cheek, the wind blew or I could swipe my face with my shirt pulling it over my head to put it on.

I mention my other diagnoses above because I know pain. I know neuropathic pain and I know what chronic illness looks like but whatever this is, it’s a different kind of pain. This pain is extreme, exhausting and debilitating. It can drop me to my knees in an instant. It takes my breath away. And it makes me nauseous and vomit in a split second while curled up in a ball on the floor begging for it to stop.

The right side of my face will swell and turn red as if someone had just slapped me. And when I’m not having this explosive, bone-shattering pain, my face and head will burn like someone was holding a match to it or at the least feel like I have a hundred ants crawling all over it.

I had already been disabled for 8 1/2 years when this started. I was already familiar with daily pain but 167 days ago, I woke up from my surgery a different person. 167 days ago I went from a person who knew how to function through pain, through illness, through my disabilities. I knew how to hide my pain and push through in a positive way so I could help function within my life and my family. Trigeminal Neuralgia took all of that away from me 167 days ago. I can’t hide this pain.

I am not a warrior, but I’m not medically fragile either. I’m not a fan of calling this the suicide disease. I’m a human being living with several chronic illnesses and pain conditions. I choose to live and learn to function through my pain and in spite of my disabilities the best I can. I don’t always achieve that goal. There are days I am bed or couch-ridden, in a wheelchair or put in place by my loving husband who knows when I’ve pushed myself too far past my limits.

TN will not dictate the rest of my days. It may dictate some but I will not allow it to take away my life.”

Click here for more posts about trigeminal neuralgia

A face covered by both hands. A mirror image is showing on the opposite side. Background is black with text: How to make an invisible disability visible

Make Your Invisible Disability Visible

By talking or writing about your pain, you could help to make your invisible disability visible.

The Facial Pain Association would like people to share their facial pain stories using the following hashtags:

#FaceTodayTogether #MyTNStory #MyGNStory #MyGPNStory #MyONStory

Please use #FaceTodayTogether then whichever other hashtags apply to you.

Learn about simple ways you could spread awareness

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2 thoughts on “How to Make an Invisible Disability Visible

  1. This is such a good twist on invisible conditions – how to help make them visible in some way, which benefits awareness and understanding generally. Brilliant thinking, Liz.

    A prehistoric dentist extracting teeth without anaesthetic? Sounds like the dentist I had as a kid! 😆 Evil man, my mum still feels guilty about making me see him when I was little.

    Even though I don’t have TN, I do have facial pain and eye pain to be able to extrapolate a little from that experience. But it’s you sharing your story and making it so descriptive that gives me – and everyone else with TN – a better insight into what it’s really like. As do all the stories from those who have TN like you’ve kindly shared here and imagery to show just how vast the nerve map on the face is. I just wish none of you had to live with it, day in, day out. It sounds nothing short of utterly horrendous.

    I agree on being quite glad what we live with respectively are invisible conditions. I’m not sure how hellish we’d look if they were visible – I think we’d break a few mirrors! xx

  2. Thank you so much for for sharing this message. I have just been officially diagnosed with TN last month. I’ve been in pain for years. I also have “complicated migraines “ and fibromyalgia. I am so blessed to have come across your blog.

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