- Lichen Sclerosus
- Interviews
Christel's interview
How did all start?
Check out my blog posts below for detailed journey and my social media platforms such as instagram: Christel Jules and Facebook; Christel Jules
https://www.silkystemsdesignstudio.com/single-post/2018/09/23/The-Truth-the-Whole-Truth-and-more-about-My-Truth
https://www.silkystemsdesignstudio.com/single-post/2019/05/28/The-Secret-that-Could-Kill-You
Do you already have a diagnosis? How long did it take you to get it?
3 months after years of suspicious symptoms and a long list of seeing different doctors and specialists.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Massage Therapy for Muscle Stress, Fatigue and Migraines.
Tulip Therapy with Dr. Coyle at the Coyle Institute of Pensacola, Florida
What has been the most useful thing for you so far?
Massage Therapy and The Tulip Therapy
What have been your biggest difficulties?
Pain management, juggling finances to pay for high costs of treatments, dental work needed and lack of dental coverage and medical coverage, no local support groups for auto immune conditions or primary affliction. Sleep disturbances with pain and discomfort.
How has your social and family environment reacted? Have your social or family relationships changed?
I'm very driven and passionate about my work and advocating. Once I got clear diagnosis I immediately went into action mode and began finding my voice to come forward with my personal journey to share and help other people who may be suffering. My family and friends are 100% in support just cannot understand the struggle and diagnosis completely. Some people do not know how to respond when they find out and I am getting encouragement from closed facebook books from the messages, blogs, poems and videos I share.
What things have you stopped doing?
Dancing and wanting to get back into it professionally again.
What do you think about the future?
I'm hopeful I will continue seeing and feeling improvement and make a significant influence in advocating for better healthcare, awareness, medical training, pain management and massage therapy, acupuncture, medical insurance coverage for alternative treatment surgery and procedures, conferences, events, fundraisers, marketing, medical research funding, local support groups etc.
So far, which years have been the best years in your life? What have you done during them?
I think I have lived with pain most of my life that I have had to adapt to pain tolerance.
What would you like to do if you didn’t have your condition?
I push through even when I'm in pain and haven't allowed pain to stop me from being creative and working. I think I did however detour from stage performances, film and commercials to behind the scenes for years as a way of hiding and dealing with the lack of good medical attentions and understanding for the symptoms that have been plaguing me for years/.
If you had to describe your life in a sentence, what would it be?
One big work in progress!
Finally, what advice would you give to a person in a similar situation?
Never ever give up and even when doctors and specialists tell you that there is everything seems normal and that your symptoms could be in your mind, to seek a psychologist and continue trying to convince that nothing is wrong - if you in your heart of hearts know that you don't feel well and that your body is trying to send you signals that something is wrong...please push through, buckle your seat straps and keep looking for the help you so rightfully deserve until someone, somewhere takes you seriously and can offer alternative treatments and good medical attention.
Also, if you cannot find a local support group - try searching online for some sort of support and connection to people going through similar circumstances. It helps to know that you are not alone and connect with others who are going through similar circumstances once you are able to get a clear diagnosis.
Try to speak out to bring awareness and much needed funding. We can only see change when we stand unified for better healthcare.
