Tonight Becky tells her story of life with Lamellar Ichthyosis. It took her a long way to come to terms with her condition – and the turning point for her was Camp Discovery. I am so glad she’s stopped worrying and has made her health and happiness a priority.
“What is it like to live with ichthyosis? It is itchy.
Then when you go out in public and people look at you funny, stare at you, laugh at you, or make a rude remark you wonder what is so wrong with me. What is it that is different about me? Then you remember that your skin is the only thing that is different. The thoughts start to go through your head what would it be like to not have to put all of these creams and ointments on several times a day, not have to take a 2 to 3 hour long bath every day, not to spend most of the day itching, and not have to worry about what other people are saying and doing behind your back. You start to think that it would be great to sweat like a normal person. To not have limitations on what you can or cannot do because of your skin. All of these thoughts and more have gone through my head at one point in time in my life.
Then I stopped thinking like this. Up until I was 18 I had never meet anyone else with a skin disorder. My parents were members of F.I.R.S.T. but never did any of the activities or conferences. I felt alone, lost, and out of place. I felt like no one understood me or my skin. Then I learned about Camp Discovery through the AAD (American Academy of Dermatology). After meeting the kids and adults at this camp my self-esteem, self-confidence, and respect for myself increased and became a more important part of my life. I stopped caring about what other people were doing or saying about me. I started to focus on me and making myself happy and healthy a priority.
I still have days where I will see a little kid ask their parent “what is wrong with her?” I put a smile on my face and just keep walking. I still have thoughts about what it would be like to be normal. To do anything I wanted but then I realize that being normal is what I am. Take 5 minutes and talk to that person that does not seem normal to you. You are going to find that they are just as normal as you are.”
May is Ichthyosis Awareness Month – I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.