Lyme, Fibromyalgia, Migraines, Medication, and Nonbinary Trans Talk on Invisible Not Broke
Warning: We really got into some intense issues from body issues, to disordered eating to suicide. If these are upsetting please look under recommendations for help and helplines.
First an apology on behalf of Skype on the frustrating audio! If any of you tech geniuses know another way to conduct interviews with everyone being able to see each other PLEASE reach out! Otherwise, I PROMISE you this interview is worth listening to even with the audio. Eliott has become one of my favorite people. I can not thank Eliott enough for VERY gently correcting my language to be more inclusive and for explaining trans and nonbinary in ways that I could really understand. Eliott also has some incredible coping issues for pain management which they learned from fibromyalgia, benign hyper-mobility, after effects of Lyme disease, depression, generalized anxiety. I hope you enjoy and please listen both weeks. This is our first 2 parter.
Anyway, Here are some resources for the podcast notes!
-A basic definition & concept breakdown: http://www.tranarchism.com/2010/11/26/not-your-moms-trans-101/
-An article about understanding genderqueer, a term like nonbinary https://genderqueer.me/2013/04/17/explaining-genderqueer-to-those-who-are-not/
-alokvaid menon on instagram (alokvmenon—live videos especially) and their page on facebook, They’re a trans, gender non-conforming person of colour who is excellent at being honest and vulnerable in their daily experiences of cissexism and harassment
-blog about chronic illness: chronicill on wordpress or chronc-ill.tumblr.com
-collage instagram: eliottgennieve (touches on chronic physical and mental illness, being trans and nonbinary, and other various life things)
-nonbinary 101/meeting a nonbinary person: https://valprehension.com/genderqueer-101/
-an answer to common questions:
-a video to explain the term nonbinary to kids:
-a basic trans healthcare breakdown: https://www.healthline.com/health/transgender-friendly-healthcare-language#4
-also a fellow podcast! How To Be a Girl
-a website with a lot of articles directed at parents of kids coming out as LGBTQ: http://mykidisgay.com/category/gender/
-Chronically Fully Sick in Facebook
-post on They pronouns in grammar: https://motivatedgrammar.wordpress.com/2009/09/10/singular-they-and-the-many-reasons-why-its-correct/
-article about talking to a trans person etiquette:
-PDFs of a book about gender:
What is the best purchase under $100 that helped your life
CBD Innescents Salvation Hot Freeze Skin Salve (they have various sizes, all under 100–I have a $14 one)
-Ice Face Mask/Cold Therapy mask, the brand I got was Perfecore from Amazon ($20)
-Electric Heating pad (I got this a long time ago but I believe it was $20-30)
What is your disorder? *
At what age did your disorder become a daily issue? *
Who were you before your illness became debilitating? *
Same person I am now? Maybe more confident in my ability to do multiple things in a day.
What would you do if you were not dealing with your invisible illness? *
Probably adventuring outside much more and seeing my friends more often. Running, swimming, or otherwise working out more. Riding my longboard.
What would you like people to know about your daily life? *
My capacity to do things can vary by the hour and even when I’m “fine” there’s at least a minimal base level of pain.
What would make living and moving in the world easier for you? *
Less fear of judgment from strangers about my age & appearance & use of a cane. Understanding from employers about the variability of my disabilities. Access to medical marijuana.
Do you have any life hacks? *
Have friends who encourage you but also understand your limits may fluctuate. Keep your car keys in the same place, like a basket by the front door esp if you have fibro fog. Keep water & a heating pad by the bed, along with art supplies and electronics & chargers.
What kind of support do you get from family or friends? *
I currently live with my parents and they help with buying groceries and sometimes cooking food I can eat (I’m vegan, they’re not). My friends support me with advice and their belief in me.
Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *
How has your invisible illness affected your relationships? *
I don’t get out much to meet people, so I don’t meet new people and miss hanging with the ones I know. Romantically, using a cane & having an unpredictable body seems too scary for other people.
Is there anything you are afraid to tell people in your life? *
How much pain I’m actually in and how long it actually lasts
Does the fact that your disease is invisible change how healthcare professionals treat you? *
Yes, doctors don’t see my condition as urgent or believe how frustrating it can be. I feel like I’m also treated immaturely because of my age in combo.
What is your best coping mechanism? *
writing poetry or blog posts, cooking, and making art (also weed— but I can’t access that/mention it due to my job)
What are you the most concerned about and the hopeful for in the future? *
I’m most concerned that I won’t be able to complete my degree and I’ll have to move back home, and that I won’t be able to go on the road trips, travel, or hike how I want to. I’m most hopeful for all the really awesome experiences I’ll gain in graduate school and just in life because I love to do things like go skydiving and I want to do so much more.
What is your favorite swear word?
What is the hardest and/or best lesson your condition has taught you?
Not to take days where I can do whatever I want in terms of physical activity for granted. That true friend will work to understand and be accommodating of your needs.