What is it like living with EI?
I asked the members of the EI support group to give examples of “Living with EI is…” and I’ll share some of the responses here. I warn you that reading them makes me cry, because some of them really sum up how hard it can be sometimes, but also because this is like looking into what my daughter’s life might be in the future. I just hope that we can realise our potential with this project, and that it will lead to a cure someday soon.
So, here goes. Living with EI is…
No one wanting to hold my daughter’s hand at playtime because her skin looks and feels different
Being afraid of seams, tags, and edges on clothes because even ‘Seamless’ clothes cause blisters
Not being able to drive in the car for more than 15 minutes for fear that the car seat will cause blisters, and knowing that every bend or speed bump will make it worse
Having to plan 2 hours in advance of leaving the house, to make sure there’s enough time for the bath, the scrubbing, the wound care, the creams. Half the time we don’t make it, and no one can understand why. It’s very isolating.
Having a fun day out and then finding all the wounds that day of fun has caused
Never feeling able to take a break from the care routine, no matter how tired, sick, or hungry anyone is, the routine must be done, otherwise she suffers, and I will never be ok with letting her suffer.
Everyone staring or backing away because they’re afraid it’s contagious
Wearing special clothes to prevent raw skin wounds from normal play, and to try to prevent yet another skin infection
Being afraid that her teacher won’t notice she’s overheating until it’s too late
Being scared to cuddle my baby in case the heat from my body causes her skin to blister
Having to buy a million pairs of shoes and living with the disappointment that comes when every single pair leads to a blistered ankle in under 5 minutes
Soaking my daughter fully-clothed in the bath because her clothes have fused with her wounds
Being rushed to hospital because of severe skin infections which led to sepsis
Having skin infections so painful that you can’t move, sleep, or eat
Watching my daughter get sent home from school or sent to sit in the hallway during class because her peers complain that she smells
Having people think I abuse my baby because of how his skin looks
Having people approach the stroller to see the baby only to recoil in horror and ask “What’s wrong with your baby?”
Smiling tightly, and trying to graciously thank people when complete strangers tell me how I should fix my skin
Missing out on all the fun stuff because you’re not physically able to go
Having to use a wheelchair because my feet are just so sore
Having to use a Dremel on my hands and feet just so they stay functional
Growing up feeling lonely
Being your own doctor, because no healthcare professional has a clue
Having to become the expert in your medical condition because most healthcare professionals haven’t heard of it
Having to think 5 steps ahead for every outing, holiday, trip, and activity
An exhausting care routine, where no day can ever be a ‘lazy’ day
Peers being afraid to sit next to you in fear that you’re contagious
Being refused entry to a public swimming pool
Being kicked off a public bus
Being removed from a flight, because I didn’t have a medical note to prove my son and I were not contagious, despite repeatedly explaining our medical diagnosis
My baby being refused by a private nursery, only to later find out they continued to accept new children after saying they were full to me
Overcoming barriers medically, emotionally, and physically
Not being able to go outside and play with the other kids because I can’t sweat like everyone else
People saying “Oh my cousin had the same problem, you should try aloe vera, it worked great for her!”
Watching from the sidelines while others fulfil the dreams you once had
Never feeling like you truly belong because people are just being nice out of pity
Hearing my 11 year old son tell me he wants to kill himself because he can’t live with the pain anymore
My daughter being left out because even her own cousins don’t want to play with her
People staring at us wherever we go
My daughter praying to God to close her skin so that she can look like everyone else
Constantly battling between trying to appear normal, and having to prove that you are in fact disabled
Going through heartbreaking rounds of IVF because you’re terrified of passing it on to your baby
Doing whatever you can to hide your imperfections from the world
Not being able to buy the clothes you really love
Knowing your dream career will forever be out of reach
Spending 4 hours in the bath scrubbing your skin off to feel ‘normal’ for a couple of days, no matter how painful it is
Fearing going to a friends house because their sofa is a colour that everyone will see the skin that has sloughed off while I sat there
Everyone at school referring to me as “The boy with the weird skin”
Having no decent clothes because my creams ruin all of them
Being asked if I was burned in a fire
Being told “You shouldn’t be on rollerskates”
Feeling sad that I’ll never, ever feel good in my own skin, despite spending hours trying to feel as good as I possibly can
My body not being able to keep up with what my mind wants to achieve
Being reprimanded repeatedly by strangers for not looking after my child and that this neglect must have caused the skin redness, flakiness, soreness, etc
Always feeling uncomfortable
Always feeling out of place
Feeling ugly and jealous of people with good skin
Having to contend with the heat of summer by hiding inside, and the pain of my skin cracking from the cold in winter
Wanting to go in the pool, but being afraid of everyone’s stares
Some positives, Living with EI is…
Finding strength in yourself
Learning how to read what your body needs
Being empathetic and compassionate because we know how awful it is to be bullied and I wouldn’t want anyone else to feel that way
Connecting with other families that become your best friends because no one else will ever truly understand
Having the courage and confidence to speak out and try to bring awareness of the condition
Having the ability to see beyond what people present on the outside
Being strong, brave, and absolutely amazing