I Have An Unusual Skin Condition. After 10 Years, I’m Done Hiding It.

I was 19 years old when I noticed a large lump forming in the centre of my chest. My teenage face had always been scattered with pimples, and on my shoulders I had what was referred to at the time as “bacne.” But this felt ― and looked ― different.

At first I thought it was one of those under-the-skin pimples that had led to a diagnosis of cystic acne and prescription of Lymecycline when I was 15, but the red, raised lump on my chest was much firmer and didn’t have a “head.”

The lumps gradually spread across my shoulders and neck, hardening like small red stones on my body. It took me years to admit something was wrong. Instead, I avoided the mirror when I undressed so that I didn’t have to notice the growing number of large, protruding bumps. It wasn’t until they started to become irritated and itchy that I finally visited my doctor, who referred me to a dermatologist immediately.

At the dermatology clinic, the doctor examined me with the kind of squint that suggested my skin was a medical mystery she might enjoy unraveling. “You have a form of keloid scarring that develops from acne called keloid acne vulgaris,” she announced. It sounded to me like a rare disease that people in the 1600s would have been shunned for.

My mind was stuck on one thing: How do I get rid of them? Dr. Haddon explained there wasn’t a “cure,” but steroid injections could help shrink the scars. A few weeks later, however, I received a call from Dr Haddon: “We’re running a dermatology case study open day for unusual cases. It might be a good opportunity for you to get advice from multiple specialists. Would you be interested?”

That’s how I found myself standing in a hospital room, stripped down to a vest top, while a group of dermatologists — clipboards in hand — filed in. Instead of my name, there was a sheet of paper stuck to the outside of the door with “Case Study 6” on it.

One by one, the doctors walked up to peer at my scars and make notes. Occasionally, one would reach out and prod my shoulder like I was some kind of interactive display at a museum. My skin wasn’t just a problem, it was a spectacle. One doctor asked how long the bumps had been there, but for the most part the room was silent other than the sounds of note-taking and shuffling of shoes on the squeaky hospital floor. Nobody asked how I felt about any of this.

The dermatologists moved on to the next patient — No. 7, presumably ― and I walked out feeling more alien in my skin than ever.

Although I began the steroid injections, my scars didn’t seem to fade much. They were sore, and they itched a lot, especially at night. I would wake up to red scratches over my keloids, which made them look even more inflamed.

The author at 25 years old, months after her first full year of steroid injections.

Photo Courtesy Of Emily Tisshaw

The author at 25 years old, months after her first full year of steroid injections.

My keloid scars aren’t anything like the regular acne scars I have on my face. Those I can easily hide with a high-coverage foundation and a touch of concealer. These are large lumps that only sleeves and turtlenecks can cover. So that’s what I wore for the next 10 years.

In my 20s, I became an expert in covering up. Winters suited me. In summer, when everyone else was in backless tops, their shoulders golden and glowing, I layered T-shirts under my dresses. Everyone around would be in strappy tops and slip dresses while I was stuck sweating through the armpits of my T-shirts.

The worst thing was seeing friends casually throw their hair up into messy buns, their smooth backs catching the sunlight while I was feeling like an outcast in my layers. I told myself I was making a fashion choice, not deploying a shame-based survival tactic.

I would “warn” partners about my scars before undressing. No one ever outwardly expressed any discomfort with my skin ― I seemed to be alone in that feeling. I even once had a girlfriend who told me she thought my scars were “cool.”

The author in a rare crop top she found that covered her shoulders.

Photo Courtesy Of Emily Tisshaw

The author in a rare crop top she found that covered her shoulders.

Every six weeks, I went back to Dr. Haddon for my steroid injections. It was a routine I despised. The process was painful, the results were minimal, and every visit reminded me that I was permanently stuck in this cycle of trying to “fix” myself. At one appointment, I asked, “How long do I need to keep getting these?” She hesitated before saying, “As long as you feel you need them.” Something about that answer sat differently with me.

Years passed and I continued on in my normal routine of black turtleneck winters and shirt-under-dress summers, until I started sea swimming. I had worn a bathing suit occasionally over the past decade, on holidays abroad and family outings to indoor pools, but I always felt uncomfortable, and it was never something I would’ve chosen to do on my own. But now I was willingly getting into a bikini, because I had realised that I needed to get sober.

In recovery, the ice-cold British ocean became my replacement for the highs I once desperately chased. The shock of the water jolted me awake in a way nothing else could, numbing every thought except the one telling me to keep breathing.

For the first time in years, I stood on a beach, scars exposed, and walked into the sea without thinking about who might be looking. It was terrifying. And then, it wasn’t.

It felt like with every swim, I got more comfortable. The water didn’t care what I looked like. The sea wasn’t judging me.

I spent almost every morning for two years splashing in the cold ocean. I stayed away from drugs. I found a community of other women who liked to sea swim. They called themselves The Blue Tits. Their bodies were all different sizes, some had stretch marks and some were covered in beautiful coloured tattoos. I wasn’t judging their bodies like I judged my own. And after a decade of shame, I could feel something shifting. I was tired of hiding. I realised I didn’t owe anyone “perfect” skin. If I could stand on a beach as the rain fell, and the icy water pelted my skin, I knew I could wear a damn dress without the extra layer.

The truth was, I was exhausted. Exhausted from the constant anxiety over whether someone might notice my scars, or question why I always covered my shoulders. Exhausted from missing out on clothes I loved. Exhausted from feeling like my body was something to be hidden.

The author, always pairing her dresses with tees (age 28).

Photo Courtesy Of Emily Tisshaw

The author, always pairing her dresses with tees (age 28).

After years of sharp needles that burnt like a hot rod on my skin, Dr. Haddon agreed that further steroid injections weren’t necessary, and also that the skin could be tattooed on after a few months had passed — something I had wanted to do for a while. I visited an artist who had prior experience covering scars with tattoos. “I once tattooed a guy who was run over by a car!” he told me.

I asked him to do “something big,” and he covered my right shoulder with a large green snake that twisted down my arm intertwined with orange peonies. Snakes are supposed to symbolise new life: the shedding of skin, releasing the weight of the past. But I wasn’t letting go of my old self, I was embracing her for the first time. After years of running, it felt like I had finally come home.

At 30, the author is embracing her skin and showing off her tattoos.

Photo Courtesy Of Emily TIsshaw

At 30, the author is embracing her skin and showing off her tattoos.

I wish I could say that I am now cured of all insecurity, but the truth is, self-acceptance isn’t an overnight transformation. I still have days where I wish my skin told a different story. But I’ve learned to love who I am, scars and all. Today, I’ve swapped the turtlenecks for tank tops. I let the sun touch my shoulders. I let myself be seen.

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Help! My Kid Hates How They Look In Photos

Deidre Belton, like parents everywhere, knows that her child is absolutely adorable. When Alexander was small, he became accustomed to Belton and other doting relatives telling him, “You’re such a handsome little boy.”

His usual response? “Yes, I am.”

Belton has noticed, however, that as he approaches puberty, he is showing signs of taking a more critical eye to images of himself — examining them with the gaze of his peers instead of that of his adoring family.

For a school project, he was tasked with bringing in a baby photo. But when Belton provided him with one, he refused to take it in, saying, “I’m just worried somebody will say I look like an alien.”

Belton, who is from Missouri, United States, remembers thinking, “What is going on?” Realising that her own body-consciousness was impacting her child, Belton has begun to check the comments she makes about her own appearance. This strategy, coupled with keeping Alexander off of social media, has been effective — for now.

But Belton is bracing for the turmoil around self-image that adolescence will bring, particularly in a day and age when everyone’s bodies are so thoroughly documented.

“All they see is images,” Belton observed, describing her son’s generation. “All day they’re on the computer, they’re on a tablet … and then they’re very critical of themselves and other kids. It’s like the older that they get, the more conscious that they become about their self-image and how they look.”

HuffPost asked several experts how parents can support their children through this phase of looking at themselves critically and help them maintain a positive relationship with their bodies.

Expect self-criticism, but don’t condone it

There isn’t one age at which kids begin to criticise pictures of themselves, but “becoming critical is not uncommon when one is at an awkward time in growth and development,” psychologist Crystal Williams tells HuffPost.

The route that their body takes into adulthood can be a source of struggle for adolescents.

“Girls usually mature before boys and many put on weight before they grow taller, which feels shameful in our ‘never too thin or too rich’ society. Boys, who on average will end up taller than girls, can be shorter than girls in middle and early high school, which can be embarrassing,” says Dr Michael Rich, director of the Digital Wellness Lab at Boston Children’s Hospital.

“Whatever their bodies do, they feel that everyone is looking at them and judging their appearance unfavourably,” Rich continues.

Dietician and intuitive eating coach Alissa Rumsey, author of the book Unapologetic Eating, says: “I have worked with a lot of clients who share with me that they first became aware of the idea that their body was ‘wrong’ around the time of puberty, due to comments from peers, family members, doctors or other adult role models.”

Such physical changes often bring about a fixation on appearance. But that doesn’t mean that parents should simply accept their child’s negative talk.

“If the self-criticism becomes debilitating, destructive or pathological,” Williams says, then parents should seek professional help.

Just because the situation isn’t grave doesn’t mean you should meet your child’s self-criticism with silence, however. Talking with them can help you assess what’s going on and show them that they have your support.

Resist the urge to jump in and contradict their criticism

You may be dying to say: “But you look amazing!” Try to fight this urge and hold your tongue.

“As a parent, it is only natural for you to want to ‘fix’ everything for your child and to take these painful feelings away – but it’s not that simple. Know that your child feeling this way is not your fault, and you can sit with them in these feelings,” says Rumsey.

Ask open-ended questions

When your child says something critical about the way they look in a photo, “be curious,” Williams advises.

She suggests asking questions such as, “What makes you say that about yourself?” or “What would you change about yourself if you could? And why?”

Criticism “could really be masking gender confusion, early development stress — being the tallest, developing larger breasts, being in a bigger body — physical malady/disability, or even an eating disorder,” Williams continues.

In order to help, you’ll have to first figure out the nature of the issue.

“Talk with them about the story they are telling themselves about their body, and where these beliefs came from,” advises Rumsey.

She adds that you can help them reframe an image by asking them questions about what was going on or how they felt when the photo was taken.

You can also help them to identify this voice of their inner critic and strategise about ways to respond the next time they “hear” it.

“Ask your child what they might say to a friend” voicing similar concerns, Rumsey suggestes.

Strategically share your own experience

If your child says something negative about the way they look in a photo, “the best response is not to reassure the child – they won’t believe you anyway,” says Rich, but to talk about a similar reaction you had when you were their age.

“This takes the focus off the child and the image of concern, acknowledges with warmth and humour that the parent struggled with similar feelings, and shows the child that they are OK with it now,” Rich continues.

Model good digital citizenship by asking your child for permission before posting photos of them.

Sally Anscombe via Getty Images

Model good digital citizenship by asking your child for permission before posting photos of them.

Be aware of the ways social media can amplify kids’ feelings about their appearance

The emotional arc of adolescence hasn’t changed, but technology has shifted their experience and “amplified their developmentally normative, if uncomfortable, self-consciousness,” says Rich.

Kids are constantly taking selfies and live-streaming, documenting their every move — “as if, undocumented, it didn’t happen,” Rich notes.

The barrage of images, many warped by filters, means that today’s kids “are susceptible to constant comparison and chasing after an impossible standard,” says Rumsey.

“The underlying messages tied up in these images, such as appearance being directly tied to a person’s morality and worth and that our bodies need changing to be accepted, respected, and loved in this society,” can cause harm, she says, even when the individual images themselves are innocuous.

If you notice your kids using filters on their own pictures, ask them why.

“Filters are most frequently used for fun, but can be used to redirect attention away from a perceived flaw,” Rich says.

If your child is upset about a photo someone else posted of them, it may be worth learning more about the situation.

You should also be aware that “unflattering photos of others can be posted, with or without filters that exaggerate ‘flaws,’ as a form of cyberbullying,” he says.

If your child is posting photos of others, ask them how they’ve selected the images, and how they think the people in them might feel about seeing them shared.

You should also talk to your child about who they’re following on social media, and how looking at posts makes them feel.

Encourage them “to follow individuals and role models with diverse body types and unfiltered photos and unfollow those that promote unrealistic standards,” says Rumsey.

Emphasise all the other things you love about your child

When you’re looking at pictures together, you might comment on physical traits you love about your child that are unique to them: a dimple, their smile, the way they resemble a family member.

In our appearance-obsessed culture, it’s also important to recognise the things you love about your child that have nothing to do with the way they look. “Reinforce the attributes that have nothing to do with appearance or beauty,” says Williams.

When you comment on your own appearance, your child is listening

urbazon via Getty Images

When you comment on your own appearance, your child is listening

Watch what you say about people’s appearances — including your own

As Belton quickly realised with her son, kids become more critical of their own appearance when they’re exposed to this kind of criticism, even when it’s not directed at them.

You might never tell your child that they look fat in a photo, but if you’re saying it about yourself, they’re still receiving the message.

“Avoid all body-shaming talk without glamourising thinness,” advises Williams.

Whether you’re taking photos or looking at them, Rumsey suggests “focusing on the memories or feelings of that moment, and avoiding any comments of physical appearance of anyone’s body”.

Be mindful when you’re the one taking photos of them

Rich recommends not forcing kids to pose, as “the way they feel will be written all over their face.”

He advises taking shots of your kids doing activities that they love. When they’re focused on something they care about rather than the fact that you’re taking a picture, “their true personality and love for what they are doing will show through,” says Rich, and you’ll have an image that more accurately reflects who they are at the time.

You should model responsible digital citizenship by showing your kids any pictures of them you would like to post, asking for their permission and respecting their decisions.

When you want to take a photo, Rumsey says that phrases such as, “I want to document this delicious meal with you all” or “I want to remember this joy we are feeling together” can situate your intention in memories and relationships rather than appearance. She also advises putting your phone aside after a couple of shots, “rather than taking several and trying to find the ‘perfect’ one”.

As for family and group photos, you’ll have to balance the long-term value of having the picture with your child’s preferences.

Rumsey suggests that if your child opts out of a group photo, “this might also be an opportunity to sit with your child and talk about their thoughts, feelings and fears about being in family photos.” Set aside your own agenda, listen and validate their concerns.

If your child feels the support of you or other family members, it “can lay the foundation for creating a more neutral reaction to photo experiences in the future,” she says.

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