10 things to never say to someone impacted by EB

mikekatepoolEB (Epidermolysis Bullosa) is a group of inherited skin disorders in which the patient is missing the proteins needed to produce the correct amount of keratin in a person’s skin. As a result, someone with EB can easily blister or lose skin. Children with EB are also known as “Butterfly Children” because their skin can be as delicate as a butterfly’s wings.

As someone who was born with EB and has lived with it for now 40 years, I’ve heard plenty of well-meaning words from people. Some of them, however, have been out of ignorance or innocence. Some things have been downright hurtful.

Here are some things you may want to refrain from saying to someone impacted by Epidermolysis Bullosa (EB): 

1) OH! You have EB? I have a friend who has (Eczema, Psoriasis…)! 

Why It’s Offensive: EB is not similar to Eczema or Psoriasis. EB is a genetic condition that causes the skin to break down. EB can cause skin to literally fall off. Though it is possible for someone with EB to also have Eczema or Psoriasis, they are not at all related. There is no comparison between the two. Treatments and care for each are completely different. People with eczema generally do not need feeding tubes. Eczema does not lead to death like EB does. Psoriasis does not cause a lifetime of relentless, unbearable pain. This could be compared to saying to someone with a child with Down Syndrome that you know someone with Cerebral Palsy. They’re not the same. They don’t impact the family the same, and the prognosis for each are completely different.

2) Have you tried using (this cream) or (this oil)? It did wonders on my friend’s skin. 
Why It’s Offensive: Believe me. If there was a cream or an oil out there it’s probably been tried by someone with EB already. EB is not a new disorder. EB is not always acquired. EB can create open wounds across the entire body. Applying any kind of cream or oil directly to the body can potentially cause infection or even death if not careful. Though the good intentions behind those statements are understood, they can be interpreted as ‘just another suggested uneducated remedy’.

3) Well, it’ll get better. 

Why It’s Offensive: EB is chronic. EB is terminal. I’ll repeat myself.  EB is chronic. EB does not just go away. EB does not go into remission. EB does not take breaks. For some, EB can improve over time. For others, EB worsens with age. For many, EB WILL ultimately result in the death of the patient. Though the Simplex forms of EB carry a normal life expectancy, the worse forms, like Junctional or Recessive Dystrophic are typically terminal by the time the patient is 30. EB can lead to cancer, systemic infections, MRSA, and organ failure. This is the reality of EB. This also applies to those who believe that EB can be prayed away or into remission. Any parent of a child with EB has probably already done more praying that you’ve done in your entire lifetime. It still hasn’t gone away.

4) Was your child burned/abused? 
Why It’s Offensive:  First, I shouldn’t have to explain why this question is offensive. If that is the first question that comes to your mind when you see someone with EB, then you should take lessons in etiquette and overall manners. This is not just offensive for people with and parents of someone with a disability. This is offensive, period. How would you feel if someone asked that of you if your child broke their arm? No, parents of children with EB did not dip their children in battery acid. Parents of children with EB did not dip them in boiling water. What a horrible question to ask!

summer905) You don’t look like you have EB…
Why It’s Offensive:  Just like most other disorders, there is no set “standard” appearance for having EB. EB comes in a variety of forms. For some people, EB only impacts the hands and feet.  For others, EB can cause severe internal and external damage. Some with EB live to the full human life expectancy, have children, get married and endure little impact. Others have serious disfiguring of the hands, feet and facial features. Some people have very obvious wounds, while, some intentionally hide their wounds to avoid stares and attention. Some people with EB have full mobility of their extremities while some have needed amputations.

6) You’re such a young child
Why This Can Be Offensive:  EB stunts growth. A person who has EB may appear the size of a ten-year-old, but may actually be in their twenties. EB does not discriminate based upon age, race or gender. EB does not just impact children. Never assume the age of someone with EB. Instead, ask them. Never speak to someone with EB as if they’re a child until you know for a fact that they are. Speaking to someone as if they are younger than they are can sound condescending and hurtful. EB does NOT impact mental ability. People with EB are actually highly intelligent individuals. Speak to people with EB just as you would anyone else their own age.

7) You’re a genuine HERO
Why This Can Be Offensive:  People with EB don’t aim to be heroes. People with EB don’t want to be treated any differently than anyone else. People with EB generally don’t view themselves as martyrs and don’t want to be treated as such. People with EB know no other life than their own with EB. To someone with EB, there was no existence before EB. EB just always has been. Someone with EB does not know, nor will not ever know what it’s like to have ‘normal’ skin. There’s no way for someone with EB to adequately and fully describe what having EB is truly like in comparison to someone without EB. It’s like someone asking me what it’s like to have thick wavy hair. I don’t know. I don’t know what it’s like to not have to worry about humidity levels. I don’t know what it’s like to not have to gauge on a daily basis how much I can walk that day. I don’t think any of that in an effort to be a hero. Sure, I may be someone’s hero. I’m OK with that. But, I never, ever, feel comfortable being put on a pedestal for being just me. I can’t help the way I am. I just am.

8) EB is a horrible disease
Why This Can Be Offensive:  There’s little argument about this. EB is, and can be horrible. It can be horrible for the parent in much different ways that it can be for the patient. EB sucks at times for both a parent of a child with EB and the person with EB. But, don’t go out of your way to tell someone with EB this unless you know that they’re comfortable with those terminologies.  Again, someone who has EB knows no other existence, thus, has no frame of reference for comparison to life without EB. To people with EB, it IS their only existence. EB by default, causes emotional distress, anxiety and self-awareness issues as the patient gets older. Therefore, potentially, if EB sucks, and EB is their only existence, then, it can be viewed that their existence must suck, too.
Additionally, though a disease is literally defined as: a disorder of structure or function in a human, animal, or plant, especially one that produces specific signs or symptoms or that affects a specific location and is not simply a direct result of physical injury there is an unfortunate stigma with the word that implies that EB is contagious. It is not. EB is purely genetic and cannot be transmitted via physical contact. Instead, some may prefer that it be called a “disorder”.

secondgrade9) You’re just trying to get attention
Why This Is Offensive:  The overall condition of someone with EB can change at the drop of a hat. In the morning, someone with EB can have bundles of energy, or be able to go for a walk. But then, by lunchtime, they can be worn out or completely unable to take another step. For the most part, people with EB will know their own limitations by adulthood. However, when those limitations change from day-to-day, each day is a guessing game and a new attempt to push the boundaries. Some people with EB improve over time. Some deteriorate. However, one thing that someone with EB does not want is more attention drawn to them than already is by default.

10) G-d never gives you anything you cannot handle./It happened for a reason
Why This Can Be Offensive:  There are a lot of things that cannot be explained. For a parent now forced to watch their child writhe in pain 24/7. G-d must be a cruel god then to allow a child to suffer this way. What logical reason is there for EB? What is the purpose of creating people whose skin can literally fall off at the slightest touch? What reason is there to create a disorder that takes babies in the most cruel way within months of their birth? What possible logic is there in making a child’s short life filled with unbearable agony. There is none. There is no reason that makes sense. Sometimes, things just happen.

If we, as humans, could handle absolutely everything that was handed to us, there would be no suicides. There would be no divorces. People would not disappear to create a new life for themselves. Sometimes, pressure can be unbearable.

Never tell a parent that they can handle watching their own child scream in pain while they can only sit and watch helplessly until you, yourself have been in that position.

Edited to add one more:

11) I can totally relate! i got a blister once on my foot after a hike..  
Why It’s Offensive:  Unless you hike every day, all day, with every body part, there is no possible way you can begin to understand the magnitude of having literally hundreds of blisters all over your body.

*All photos used in this blog are childhood photos of myself

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About gespurr

Emily was born in Southwestern Louisiana and has moved over 20 times in her life through nine different states. Most of her life was spent in the Twin Cities of Minnesota, where she met her husband and had her only child. Both she and her husband are also only children. She graduated from Stillwater (MN) High School in 1992 and from the University of Wisconsin in 1997 with a BS in Journalism. Three years later, she met her husband, George, and they married in 2002. Their daughter, Kathryn, was born early in 2004. She relocated with her family back to Arkansas in 2005 after being away for 30 years. She currently works as a customer service representative for a wireless company and lives in North Little Rock. When not taking care of her daughter she is either cooking, working, cleaning house, sewing, gardening, knitting, crocheting hiking, traveling or spending time with her husband.

Posted on May 30, 2015, in Epidermolysis Bullosa (EB), Parenting and tagged , , , . Bookmark the permalink. 19 Comments.

  1. As someone with EBSDM, I will also add that near-strangers somehow think it’s appropriate to straight out as about how it affects sex. I started fielding these sort of questions well before I had any grounds of experience to answer the questions….

  2. Baylee Carnahan

    Hey my name is Baylee. I’m 19 years old I will be 20 in August. I was born with EB myself I have dealt with the questions the stares everything. It is hard to live with this condition. My whole life I wanted to be “normal”. My grandmother has it she’s one of the oldest people to ever live with it she’s 63. Well my grandmother was lucky to a degree when she had my aunt my aunt luckily didnt have eb. So i grew up having to watch part of my family live a normal life the life I always wanted. Its not fair and I dont understand it. My moms sister Dawn can have children and so many other things without having to worry. I’ve always wanted to have kids get married you know a normal life, but how can I when I know how likely it is for my children to live this miserable life? I also just wish people understood how hard it is to live with this condition and not treat people like us the way they do. I mean its also prevented me from having friends and the only person I can actually consider a friend is my mom because shes not afraid of my condition because she also has it. Anyway enough of my rambling I just wanted to say that this was an amazing article. Also if you ever want someone to talk who understands what your going through I’m here for you. 🙂

    • Hey Bay!
      Yes, I grew up with your mom. I know who you are. 🙂

      • Baylee Carnahan

        Lol I showed my mom this article and she said your her friend Kate!! Lol I’m so sorry I have heard about you all my life you have truly been an inspiration to me!! I’m sorry I didn’t recognize you!!

      • That’s too funny 🙂

    • With your form of EB, you have a 50% chance of passing it on, which is why your Aunt Dawn doesn’t have it and you and your mom do.

      My daughter is 11. Somehow, we got lucky with her as she did not inherit it.

      • Baylee Carnahan

        Thats awesome I’m so happy to hear that your daughter didnt inherit eb. It is a painful and just horrible condition!! And yes I know it is a 50/50 percent chance but its hard for me to take that risk. I mean if the child did happen to have EB I would feel horrible you know??

      • My husband has EBS and both of my children have it. It took a lot of convincing him to have kids, especially the second after having one with EB. I do feel guilty for pushing him, but he refused to adopt and he knew I wanted kids before we married. He has managed to have a normal life and I was told my kids would have the same type at worst so we took the chance. Keep adoption in mind. While it is expensive, those children need love too and you may be perfect for them. My daughter, just turning 10, asked me a few months ago why I married her Dad knowing he had EB. Many times I wish I wouldn’t have for my kids sake, but I can’t regret the children I have. They are my life.

    • Hi my name is Heather, I was born with RDEB myself, I’m 13 years old I will be 14 in June. I was trying to find you on Facebook but I couldn’t seem to find you. I don’t know many people who have EB, and I don’t get to talk to people with EB. So if you would like to look me-up on Facebook you can find me @ Heather Tanelle Thornton. It would be great if we can talk to each other.
      Thank!!!

      • Hey Heather

        Baylee is 21 now and hasn’t been on Facebook much recently..

        You’ll see her last name as Cohoon I believe currently

  3. my baby is dead for EB u_u

    • I’m very sorry to hear that, Zam. There are many support groups for parents of children with EB. I know several people, unfortunately, who have lost their children from EB.

  4. Hi Emily. This post is circulating on facebook and I like it!
    I would like to use it and have it translated in Dutch and French for our Debra Belgium’s website. . Is that OK for you? I will of course refer to your blog.
    I have a son, now 30years old, with EBS-DM. Doing fine, almost no blisters, runs half marathons!
    Best regards from Belgium

  5. Thank you for the what not to say—-please follow up on what TO say

  6. My son has RDEB and a comment that infuriates me is “So he was born with EB, so you can find comfort in the fact he’ll be use to the pain as he won’t know anything different.” REALLY!!! So there is a comfort in knowing your child is born in pain?! A comfort that he’ll know no different…for the rest of his life!! SERIOUSLY!! Mouth in motion brain not in gear I think!!! 😡

  7. I chuckled over number 2. “Have you tried…”. I have a much easier but very visible skin disorder (psoriasis – a fairly bad case at it’s worst, much milder now I’m past menopause), and the things people have suggested “I try” defy belief! I couldn’t write them here without being censored. What I really found annoying is people not just asking “have you tried…” but insisting I try their suggested treatment, and expressing offense if I didn’t promise to do so. It got to the point that one woman grabbed me by the hand and refused to let go till I promised! (I didn’t, I forcibly released my hand).

    • It’s just constant. I had a skin cancer check recently and the dermatologist had vaguely heard of EB but never seen it. After a slew of ‘have you tried’s including insisting on paw paw cream (just too expensive can you imagine how much you would go through!!) he declared he was sure there were treatment options I simply wasn’t aware of. He assured me if I made sure to give him the correct spelling so he could look into it he’ll get back to me with how to fix it. Strangely I haven’t heard from him….

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