Facing Victim-Blaming: Essential Insights on Managing Atopic Dermatitis Scratching Struggles

Living with atopic dermatitis (AD) comes with a unique set of challenges that often go unseen. Many people can empathize with the discomfort of an itch, but only those suffering from AD truly understand the overwhelming urge to scratch, which can lead to a cycle of pain and shame. In this blog post, we will explore the realities of living with atopic dermatitis, the mental toll it takes, and offer various strategies for coping with this chronic condition.

The euphoria courses through my body as the blood drips down my legs. Each deep scratch tears into my skin, bringing with it a temporary relief from the relentless, mind-bending itch. Somewhere deep in my mind, the guilt starts to build as I know this will only make things infinitely worse in the long run. However, at this moment, I can’t stop. I’ve held out for as long as I could and now I need to satisfy that incessant screaming in my mind to scratch—if even for a few minutes. The next day, I wake up and feel a sense of shame as I look down to the bedsheets covered in blood. My skin feels like it’s on fire. I glance in the mirror and feel a lump in my throat. I know I will spend my day in pain, embarrassed by my appearance and doing everything I can to ignore the ceaseless itch. I have too many examples of outright feelings of humiliation after stepping into the world when I really didn’t want to. The cruel comments and stares have left permanent emotional scars that have led to deep battles with mental health and feelings of low self-worth.

You Don’t Know What It’s Like

To a small degree, people without atopic dermatitis (AD) can empathize with many of its symptoms. Everyone knows the discomfort of an itch and the satisfaction of a scratch. However, this can sometimes be a hindrance for people with AD as others dismiss our experiences since they believe they understand what it feels like. I can assure you, they absolutely don’t.

I’ve had periods of time when my skin has been clear and experienced a “normal itch.” Turn up that itch and satisfaction from scratching by 100, and have zero relief for days, weeks, or months on end. Then you’re getting close to knowing what it’s like to have AD.

What is Atopic Dermatitis?

Atopic dermatitis is a chronic (long-lasting) condition that causes inflammation, redness, and irritation of the skin; it is a type of eczema.

Blame the Itch, Not the Scratch

Well-intentioned caregivers often say “stop scratching.” My message to them: Scratching is a symptom of atopic dermatitis, not a cause.

Yes, scratching certainly worsens symptoms by damaging the skin, and some efforts should be made to limit this. However, there’s a risk of straying into victim-blaming, making someone—especially a child—feel as if it’s their fault their skin is painful for “choosing” to scratch. This couldn’t be further from the truth. The vast majority of energy should be focused on relieving the itch rather than stopping the scratch.

• Wet wraps
• Cotton gloves
• Short fingernails
• A balanced diet

However, despite these strategies, they will often fail if the root issue of the itch persists.

I remember numerous times of waking up without my gloves on and blood under my fingernails with no recollection of taking off the gloves during the night. Don’t compound your child’s guilt and discomfort by berating them for their scratching.

If I were to cover you in itching powder, there becomes a point where it is no longer a choice to scratch. We can all sit on our hands and hold out for hours or days, but eventually, we would all break, and we cannot be blamed for doing so. However, often people with AD do feel blamed, as if our condition is entirely self-inflicted.

I fully understand the awful and frustrating situation caregivers are in. They know that a particularly heavy scratching session can result in damage—more pain and discomfort at the least and serious wounds and infections at the worst. Instead of chastising, caregivers should gently encourage their children to stop scratching with kindness and empathy.

The Mental Toll

The psychological effects of AD can be particularly catastrophic. Not only are individuals subject to bullying and isolation from others, but internal factors can also negatively impact mental health.

When the entire surface area of your body feels damaged and unhealthy, you start to feel broken and unhealthy as well. This is incredibly challenging to live with mentally. Frankly, there are enough psychological effects of the condition itself without having to deal with being blamed for the symptom of itching.

The mental toll of AD is especially important for teachers to understand; children must be given the kindness and compassion they deserve. That child has to sit in a classroom while feeling as if their whole body is covered in ants. It dominates cognition and can follow into adulthood, affecting productivity and focus.

My symptoms often present as redness. I remember one instance when a teacher, trying to find the culprit of some misbehavior, decided, “It was the student who had gone the most red.” Please don’t be this teacher.

It’s disheartening to note that not even in the healthcare field is everyone empathetic toward skin conditions and their symptoms. At times, I’ve observed a cavalier attitude, which is concerning.

Something That Has Helped the Itch

People with AD likely know to moisturize, avoid allergens, and wash bedsheets and clothes regularly. If I could offer one piece of advice outside these standard management tips, it would be to wear sports compression sleeves. They have helped me immensely on my arms and legs when the itch has felt unbearable, allowing me to get some sleep.

Currently, there is no cure for AD. Thankfully, promising medications are emerging, with some targeting the itch specifically. There is hope on the horizon.

For those yet to find relief, emotionally relying on a support network is invaluable. It’s essential to have a circle of people we can turn to for help when struggling—without risking blame for our condition.

If you love someone with AD, please support us by showing kindness and empathy. And reserve any judgment when our itch becomes too unbearable and forces us into self-harm through scratching.