Life Perspective? Get A New One
Every person’s pain is relative to what they know, though if you’re like Nikki Howe and have endured a lifetime of illness and constant medical care, society’s constant aeration of ‘first world problems’ can feel at times, infuriating or just plain upsetting.
Nikki Howe is 26 years old. Her life problems unfortunately do not revolve around skin blemishes, fashion dilemmas, career options or whether or not she can muster-up the courage to post a cosmetic-free ‘selfie’ for the next superfluous Twitter campaign or Instagram photo challenge.
Nikki suffers a rare disease called Epidermolysis Bullosa (EB). This disease causes her skin to blister with the slightest touch. It is a painful skin condition that has been likened to living with third degree burns that must be bandaged and dressed every single day of a sufferers life in order to medicate and protect the wounds.
“When I was younger, I always thought I would have a normal life. I had always thought that EB was simply an external skin problem and that was it,” she explains.
It was in her later teen years that her health began to steadily decline and is currently undergoing dialysis after being diagnosed with kidney failure as a result of EB-related complications.
Just like the rest of us, this 26 year-old keeps active profiles on a few different social media pages including Facebook, Twitter and Instagram, etc. Just like the rest of us she is also subject to reading the so-called ‘first world’ problems of many people that she follows.
Though real frustration was felt from a particular campaign that encouraged women to post ‘selfies’ without make-up to promote body-acceptance and to allegedly show youngsters what a ‘real’ person looks like without photoshop. This campaign prompted a response from Nikki that challenged people, not just women, to stop being so superficial.
“Obviously, I realise it is important and fun for girls to dress up and feel good, and I’m sure that I, too, would have those superficial concerns if I didn’t have EB, but having the experiences I’ve had, I’ve come to see that there are other things much more important and I wish other people could see that too,” she says.
Nikki says she feels frustrated by the fact that in most cases there is nothing physically wrong with the every day person, and that leaving the house without make-up, or taking a ‘selfie’ without make-up is a non-issue.
She takes aim particularly at the stem of the issues, companies that convince us that the most important thing is to look as close to perfection as possible.
“Proactive ads seem to play on my TV 24/7,” she explains, “the message seems to be that if you have even the slightest break out on your face, then your life isn’t worth living.
“I totally get that its nice to look and feel your best, but these ads make it seem like a person is unable to achieve their life goals or live life to the fullest all because of some spots on their face.”
She admits that this struggle for perfection is such a foreign and unattainable concept to someone who’s struggle is to simply stay alive. It is her hope that others could consider their blessings and gain a better perspective of a bigger picture.
Some of the things that Nikki wishes she were able to do would seem like a mundane part of daily life to the every day person.
“I remember when I was younger, my biggest problem was that I didn’t have any fingernails to cover with sparkly nail polish!”
She recognizes that over time and with the worsening of her condition, her wants and wishes have changed.
“When I began losing my hair I was jealous of all the girls who were able to style theirs, but it is not until you lose something like the ability to walk or have two functioning kidneys that you realise that the superficial things don’t matter.
“I wish I could have all the basic life experiences that most people my age are having, you know, a first boyfriend, going to uni, getting a job and moving out and learning to drive.”
Right now though, the biggest wish on Nikki’s list is to hold a clean bill of health and not to have live a life that is dependent upon dialysis every night.
“I guess I just wish that people would stop and think about how lucky they are,” she says.
What is Nikki’s advice for others?
“Don’t take your health for granted because you never know when things can change. Worry about actual bad days rather than just a ‘bad hair day’”
Written by Jessica Teni with Nikki Howe