Instagram Interview: @wokewithinskin
The Editorial Team at AtopicDermatitis.net is highlighting people in the eczema community and their healing journeys in a series of Instagram Interviews. We talked to Raelle (@wokewithinskin) about growing up with eczema. She shares about a breakthrough in her healing journey, how to support someone with eczema and how she got involved with the eczema community.
Raelle's eczema story
My personal experience with eczema began at the very moment that I entered into the world. Being born with eczema my mom described it as my skin feeling like sandpaper when I came out. Eczema has been a part of my life up until this very day throughout adulthood, as I never grew out of it.
From childhood to teen years
Due to diet, household changes and many dermatology visit runarounds it was always able to be controlled once the proper steroid or antihistamine dosage was high enough to kick in. I vividly remember having to go to the emergency room in the middle of the night for my eczema as a child, but as I hit my teenage years the medications started working better, so my eczema wasn't always about torture, itch, and sleepless night sessions anymore; it was "simply" something to hide or receive an antidote to get rid of once it popped up again always at the most inconvenient and usually stressful times.
My medicated ointment stopped working
Eventually, I'd recognize patterns and why I would have flares and accept that this is just a mark that I will have for a few months and move on with my life doing the same daily skin routine and diet changes. It was not until the medicated ointment that I used religiously everyday for many years stopped working completely at the age of 26 that eczema was once again at the forefront of my life, needing to regain control and understanding. At this point, my skin caused me to become unrecognizable from my face on down and all of my hair also fell out.
The awakening that inspired her Instagram
Editorial Team: Your Instagram handle is @wokewithinskin. How did you choose the name? What does it mean to you?
Raelle: Because I had to start from scratch relearning my body from the inside out this time dealing with the coined expression of "Topical Steroid Withdrawal" (TSW), for the first time ever I found myself embracing eczema fully as a part of me and not just an unknown alien reaction.
I was no longer in the denial stage of my suppressed grief with a lifelong trial and error effect of eczema. It actually became a guide towards my greatest health, clarity and even strength and awakening. I was finally "WOKE"! But not in the sense of how the pop-cultural term is used in regards to being aware of the outward or external attacks of the world against you that you have no control of, I was "woke" internally first on all of the battles within our mind, cells and core of our biology of WHY eczema is even happening to me!
Taming the beast from within
I realized to a higher extent and holistically why my skin was reacting the way it was to the uncontrollable point that it reached and I learned how to tame the beast without external medicated creams and I felt empowered. The skin is only the external reaction of what's truly happening internally so after seeing some progress of my own with the lifestyle changes and tireless research that I did I was on a mission while still partially bed-ridden at the time to spread what I found to help others. I was healing from within over covering the sin (or eczema), therefore @wokewithinskin was created.
How to get involved with the eczema community
Editorial Team: It looks like you've gotten pretty involved with the National Eczema Association (NEA), and recently attended the Eczema Expo. What are some tips for someone who wants to get involved in the eczema community?
Raelle: Creating an Instagram spreading the positive messages focusing on overcoming many of the mental battles and insecurities that come along with eczema, and choosing vulnerability gave me a voice that I never knew I had or that I needed. It was a lifelong locked treasure that finally was given permission to release through one of the ugliest periods of my life (literally).
It all started with #eczema
Unknowingly, my words and presentation reached other eczema warrior hearts and some of those warriors happened to be the ones behind the computer screen for the National Eczema Association, who I never knew existed until I hashtagged #eczema on Instagram during one of my suffering days. NEA has call-to-action social network posts and advocacy information on their website www.nationeczema.org that are a part of their mission to empower us all.
Sign up and share your story online
The greatest tip I could give to anyone getting involved in a similar fashion that I am is to first sign up for the things that they are asking people to be a part of. More importantly, lead with your heart and focus on your authentic story and being an uplifting spirit in places that are meant to keep you in darkness. Your own personal light will shine through every time and people will always attract to what's good at heart. Share your story online! There's SO many of us now and that makes the NEA and all the warriors very happy and continually motivated to keep going stronger. We need each other!
Support from my parents
Editorial Team: Who are your biggest eczema supporters? What are ways to best support someone living with eczema?
Raelle: My biggest eczema supporters are my parents and after them in my adult life comes the National Eczema Association. Seriously, they have given me support on a larger scale than I could have ever imagined and they make me feel like I have personal cheerleaders when many times I felt like I was air-balling all of my shots in the real world.
My parents have been my heart, my core and literal reason for my survival my entire life and nothing has changed with that over the past year having to be unfortunately dependent on them like I was a child again for a period during my worst flares and painful moments.
Eczema comes in cycles. I do not see myself going through anything as bad as I did over the past year ever again pertaining to my eczema, but when the flares do resurface like they usually always do in some way, I think that some of the best support that can be given is first, empathy. Whether you understand how much this is affecting their entire existence or not, show that you care.
Ways to support someone with eczema
Remind them that you love them for who they are and not what they look like. Ignore how bad the flare looks and talk to and treat them like their normal selves most times, but also acknowledge how bad it might look when they are ready to acknowledge it. Make them laugh, cook for them when you can. If they can bare being touched (not always likely during a flare), remind them that they're human and touch their rough skin, give a massage, run a bath, keep them relaxed. Simply, show them your love and ask them how they want to be loved during this time, it could very likely be that they just want to be left alone and invisible for a moment too.
Do not give up
Editorial Team: Anything else you'd like to add?
Raelle: If I could add one more thing to this interview, it would be to give a message of hope and endurance. The simple words, DO NOT GIVE UP is truly the summation of all the words that you can read about my eczema experience or anyone else. It gets better with time and even though you go backwards, going forward is the only way out of that so you're never behind for too long. Take pictures to track your progress. This is not an immediate life threatening disease like the severe asthma that I had to deal with as a child, and eczema has not been widely understood for many years besides external assumptions, but this skin disease will change your life from the inside out and others close to you whether consciously or unconsciously.
Talking about eczema and life decisions
For example, I never realized that I never dreamed of or imagined myself with children one day because I was sure that I did not want to pass down eczema to my children thinking that the only solution for them would be a life of steroid creams and uncertainty. That is a major decision to make and it is something I passively unconsciously never allowed myself to even hope for despite my love for children.
Conversations like this need to happen because I know that I needed to hear this from someone like me growing up. Strive to be conscious in all areas that a skin ailment can effect your life or your child and do not just accept the discomforts as only something you have to deal with no better solutions. Become as knowledgeable as you can about your health, learn from others and take it into your own hands as much as you possibly can. The information and help is out there. Your body, mind, soul and future self will thank you! #staywokewithin for your #skin. ❤️
Follow Raelle’s healing journey on Instagram at @wokewithinskin!
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