LIVING WITH ATOPIC DERMATITIS
When you have atopic dermatitis, the amount of energy that goes into trying to avoid flare-ups can feel like it takes over your life. See what life with atopic dermatitis may really look like.
Life with Atopic Dermatitis
The symptoms aren't just visible.
Flare-ups aren't just uncomfortable. Often, atopic dermatitis (also known as atopic eczema) requires daily attention to keep the itching and rash under control. Steroids, lotions and creams can help with your flare-up, but it can feel like there isn't much you can do to keep a flare from happening again. Symptoms of anxiety have been reported among people with atopic dermatitis.
That's why understanding the underlying cause of atopic dermatitis is important. After all, atopic dermatitis can be frustrating and embarrassing and make you feel self-conscious about your appearance. But understanding the immunological causes can help you understand your skin better and help you find new ways to cope with your disease.
Stories From Real Patients
Millions of people suffer from a chronic form of atopic dermatitis.
Flare-ups can have a noticeable impact on your daily life. Hear from one patient living with chronic atopic dermatitis, and how flare-ups affect her.
People often just say it's your skin, it's fine, you still have your limbs, you're still able to walk, you're still able to get out of bed, this is not life threatening, you're not going to die from this. But you know, it is quite traumatizing − the lack of sleep, the emotional turmoil and what I like to call psychological warfare eventually takes its toll.
The biggest impact my eczema's had on my life has been the lack of sleep. I do not think that I have slept a full night since I was a baby. That itch can lead to so much anxiety and so much emotional turmoil because your mind wants you to stop but your body needs you to keep going and then your hands do so much damage to your skin and that becomes a vicious cycle of stress. I have often scratched to the point of open sores or wounds and that level of discomfort is unbearable. That's when I usually call in sick or I am not able to, you know, continue on with day-to-day functioning.
Atopic dermatitis has definitely had an impact on any new person that I meet and in any social gathering but specifically when it comes to dating and intimacy, I find it very stressful. You know, when I first met my husband he did not know a single person who had ever had atopic dermatitis. He barely even knew what it was. You know, he also underestimated what this meant for me and what this would mean for us going forward. He wants to help but he doesn't know how. And sadly for him, I think this has impacted his sleep as well. So I don't sleep at night and neither does he. It does sometimes impact the level of intimacy and the level of comfort that we are able to have. Now, five years in, we are at a good point. But in the beginning stages of our marriage, when we were first living together, I think he didn't understand why I didn't always want to be hugged. I didn't always want to be touched. I didn't always want to hold hands even just walking down the street. And now I think he understands that it’s not about him and it's not about our relationship but it’s about how I’m feeling and that has been a really big struggle and a big hurdle we’ve had to overcome in our marriage.
To me I look in the mirror and I see somebody who was just ugly. And it’s sad to say but that’s just the reality, like you don’t…you don’t value yourself at all. You look in the mirror and you see something that’s gross and disgusting.
So I think there was a point where I was very depressed. And there’s still a point where there are days where I don’t want to get out of bed because you don’t want to face people and you certainly don’t want to have your best foot forward be, you know, open wounds and sores and marks on your face that people see.
I constantly fear that my child will also have eczema. The thought of this baby, male or female, having this from infancy to adulthood, I don’t know if I can cope. And I am not sure that I’m equipped to cope with managing my own condition and then managing for this child as well.
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They say that the skin is the biggest organ of the body.
The fact that for my whole life it’s been something which has constantly irritated me, means that it impacts every aspect of life as well.
Thinking about my childhood, things that stick out in my mind are when I wanted to join the sea scouts a lot of my friends were in the scouts, but the problem was they wore white shirts as part of the uniform and after a while blood spots would start to appear on my shirt and people would laugh at me.
Then in the winter they would wear a really wooly jumper and it would make me scratch, and it was the sea scouts so we had to go into the water but the salt water would make my skin flare up so, all in all I didn’t make a very successful sea scout.
The main thing that sticks out though is being bullied because of it, particularly at school. When I’d be wearing my uniform and I wouldn’t realise that there was a stain of blood down the back of my shirt, people would laugh at me, my skin would start to get flaky throughout the day and people developed a nickname for me: “Flaky Pastry” and used to laugh at me because of it.
At work I sometimes would find that I was just dragging myself into an early meeting and not really concentrating well.
Growing up with this condition I just came to get used to the fact that I didn’t sleep well, was tired all the time.
But when I got married it was like shining a spotlight on the impact that it had on me.
My wife is a very light sleeper, I’m often irritable, scratching, restless throughout the night - it made it very difficult for my wife to sleep next to me; made it very difficult for me to realise that I was having to take someone else into consideration when, before I would just come to accept this poor quality of life.
When I think about the physical effects, the main one is just the pain and discomfort. Not being able to relax just because of the constant itching.
It really took the joy out of life.
I can’t remember suddenly being aware that I had it. It was something that I always had, and just got used to the fact that that was just part of me...
...but if I actually think about what life would have been like without it: I think about the sports I might’ve enjoyed, I think about the holidays that I could have gone on, without worrying about the climate of the country or, whether I’ve got enough creams to go with me or whether I need a note from the doctor so they don’t stop me at customs with all the drugs I’ve got in my bag.
The thing is with something that has affected you for your whole life, and impacts every area of your life, it almost becomes part of your identity.
So even if my skin is clear and doesn’t show any sores, there’s still part of me that feels like someone who is going to be bullied or looked at strange.
Just imagining having creepy crawlies, crawling over your body all the time, or having an itch that you just can’t get to. Almost as though the itch is just below your skin and the more you scratch you can never quite get to it.
When I’ve felt, things are going on on the inside of my life my skin tells that story.
When my skin flares up it’s a nightmare it just feels like my face is on fire, I feel like I’m just itchy all over, I just want to get out of the situation.
I feel like, am I going to go into a situation that’s going to make my skin flare up?
So there’s definitely a reality that it’s not just skin deep so to speak, that it is something which connects to every part of your body and your whole being.
Health information contained herein is provided for general educational purposes only. Your healthcare professional is the single best source of information regarding your health. Please consult your healthcare professional if you have any questions about your health or treatment.