Name:
Kylie-Sky Lindsey
Location:
Southern California
Diagnosis/Diagnoses:
Fibromyalgia, Osteoarthritis, RSD/CRPS, unspecified connective tissue disorder, endometriosis, anxiety disorder.
Bio (Who are you? What do you do? Tell me about yourself):
I am a queer, disabled college student from Southern California. I advocate for the disabled and LGBTQIA+ communities through education and self-acceptance. I am currently studying psychology and hope to contribute to a broader understanding of chronic illness, especially as it presents in younger people.
Is there anything that helps you to rise above your condition? (Include anything that has worked for you. Examples: conventional medication, supplements, alternative treatments, diet, your faith, religion, healers, spirituality, exercise. Please also include any advice, tips or tricks you may have)
Representation is a huge thing for me. I hear stories all the time of how someone’s “aunt’s brother-in-law’s cousin had fibromyalgia, and they did [x treatment] and now they’re cured!” but this doesn’t give me solace. Finding other young disabled people through social media helps me feel less alone, and hearing celebrities like Halsey and Lady Gaga speak of their struggles shows how anyone can be affected. Plus, the more you connect with others with your condition(s), the more different treatment options you discover that may help you!
What does life look like at its best with your condition? (Describe a what a good day looks like)
A good day for me is when I can follow through with plans and actually enjoy myself. I’m always in pain, but some days the pain is mild and my anxiety is at bay enough for me to go out for leisure. Sometimes that means taking busses around the city to run my own errands, something I usually have to put off until my mom or fiancé can give me a ride. Other days it’s going to a park or museum and being able to really take in my surroundings and let them distract from the pain. These days never come without a price—I tend to be stuck in bed for a day or two after from sheer exhaustion, but it’s so worth it for a few hours of feeling “normal.”
What challenges have you faced in regards to your specific situation?
The biggest challenge for me is finding treatments for one condition that don’t flare another. For example, I injure my joints often due to hypermobility, however I’m not able to wear braces long enough for the injuries to heal because RSD/CRPS will set in after a few days or even hours of brace wear. A more emotional challenge is seeing how my conditions affect the people around me. When you have a chronic condition, especially one that comes with fatigue and unpredictability, you need to have a very strong line of communication with your family, friends, and especially partners in order to avoid resentment and misunderstanding.
They say our life experiences shape who we are. How has your condition molded you to the person you are today? How has it inspired you and what strengths have you gained from your health journey?
My conditions have absolutely shaped who I’ve become. I like to think my personality is intrinsic, I’ve been sarcastic and eccentric since day one, but my interests and life plans have definitely changed and adapted. I feel like I had to grow up pretty quickly because I started going to multiple doctor appointments per month by age seven. I gained a lot of maturity and empathy, but also a certain sense of distrust in myself after having so many professionals say my issues were “all in my head.” I had to learn how to advocate for myself and how to communicate with adults in a way that made them listen. I spent a long time trying to ignore my conditions—I even went to beauty school and told myself that I would just suck it up and work like everyone else, but that never lasted for long because I would always end up bedridden and quitting jobs over text. I finally hit a turning point when I decided that I would make my disability work for me by sharing my experiences in hope that it would make other people feel less alone.
What is the one life motto or mantra that helps you to keep fighting/going on with your condition and why?
I’m not a big inspirational quote kind of person, but one day I was brainstorming tattoo ideas and came up with “take it slow, make it count.” I like it because it reminds me to expend my energy on things that really matter, like my education and the people I love. One of the most important things I’ve learned in reference to chronic illness is pacing, so taking it slow when it comes to strenuous things like chores is something I have to remember to do.
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