Silvia Young is my next guest for the Chronic Illness Support Guest Blog! You can find information Silvia has provided about endometriosis as well as some of her journey. We hope you find this information helpful in your journey with endometriosis and/or chronic illness.
Illness: Most of you know about endometriosis, but I also have PTSD due to 25 years of medical gaslighting. Thanks to the current standards of care <eye roll>, I also have osteoporosis. I do not know the extent of my fibromyalgia, myalgic encephalomyelitis (ME), or postural orthostatic tachycardia syndrome (POTS) due to the duration of medical neglect and lack of sufficient diagnostic protocols. I take one flare at a time.
Tell us about yourself, what illness we are talking about today (definition, symptoms, etc.) and when you were diagnosed, how, what led to diagnosis, etc.
Endometriosis is a full-body disease of inflammation that attacks our organs and nervous system; the traumatic pain affects our mental health, and the prolonged lack of care leads to additional irreversible health complications including cardiovascular. Patient advocates also have to navigate the American College of Obstetricians and Gynecologists (ACOGs) propaganda, so the wall of medical gaslighting is a huge part of the experience since childhood. Unfortunately the trauma, stigma, and shame can be passed down through generations and reinforced through school institutions, so we must be vigilant to self-advocate against gender abuses and seek care elsewhere than from those society tells us to trust. Isolation and misinformation is one of our biggest hurdles. It’s why we have an uprising against the status quo, and a growing movement of informed activists.
I live in California. I’m the founder of FemTruth Policy CA, an inclusive, grassroots Coalition of patient advocates representing endometriosis, adenomyosis, polycystic ovary syndrome (PCOS), interstitial cystitis (IC), premenstrual dysphoric disorder (PMDD), uterine fibroids, post-traumatic stress disorder (PTSD), and adverse childhood experiences (ACEs), with a mission for policy reform of public health standards and (and within) educational institutions.
How long did you suffer with symptoms before you were diagnosed?
This is challenging to answer, depending on diagnosis, minimum of 25 years. Some diagnoses will not be realized in my lifetime unless women’s health is prioritized, ICD medical coding is updated, research is funded, and doctors are educated. And that would take a huge act of social justice to remove industry from influence.
What treatments have you tried? Did they help? Did you have side effects? Etc.
This is a controversial question for me to answer because I truly respect everyone’s opinion on what works for their body, and none of us can judge or preach. For me personally, infertility led me to ablation which propelled me from stage 2 to stage 4. I lived at stage 4, entirely disabled until finally granted a botched hysterectomy, which eventually led to an expert excision about five years ago. I healed in mostly bedrest and focused selfcare for more than a year following that surgery. After many trials and errors, I now try to adhere to a holistic wellness program of supplements (https://quanamccraw.lifevantage.com/), writing, yoga, cognitive behavioral therapy, Mayan abdominal massage, CBD, an anti-inflammatory diet, conch and daith piercings, and I dance as often as possible! Another huge shift was eliminating as many endocrine disruptors from my lifestyle, for example, two years #nopoo movement.
What are five must haves that you can’t live without that help you cope with your chronic illness (Ex. book to read, coloring book, heating pad, bath, etc.)?
My phone and charger!!! I am always writing and reading!
My heating pad
My fluffy (it’s a skin thing, our communities get this one!)
My Boston Terriers
My Epsom Salt baths
Do you have other illnesses? If so, would you like to mention them? What are they?
Post traumatic stress disorder
What is something you wish you would have known when you were diagnosed?
That pain (and passing out) isn’t normal, and that untreated will lead to permanent disability. To trust my instinct in times of gaslighting and to move on without hesitation from toxic situations. Being an empath is a superpower.
How does it affect your daily life?
I can no longer lead the life I led or planned to lead. I live in a new world of adversity, ableism and advocacy.
How are you doing now with symptoms etc.?
I am very grateful to be living my best life, I am at peace with it.
Is there any other information you would like us to know about your illness?
In struggling to find a language to communicate, I found my voice. Don’t settle for less than 100% authenticity. You deserve it. Your story isn’t over, live your best one because it’s all yours to live.
What piece of advice do you want to give readers?
Read as much as you can! Read my books, read Samantha’s. Read Bloomin’ Uterus articles, read Maya Dusenbery, read Gabrielle Jackson, read Nancy Petersen, read Heather Guidone. The higher your patient IQ, the faster you are to quality care and wellness. Validation in others stories ends isolation and deepens our understanding of the intersectional oppression Endometriosis brings our community; books are our lifelines. In everything you read, always question the author, check references and do your own research to develop critical thinking. But whatever you do, keep reading!
How can someone show support (awareness colors/ribbons, etc.)?
Buy merch from Endometriosis patient advocates, and know where your money is going. Support our community and share patient-advocate resources. Besides books we have advocacy tees, mine are sold exclusively through our endosister Elissa Harvey: https://www.facebook.com/elissa.cortinas, with the question… Do you know the difference between menstruation and Endometriosis? Ask me. The front of the tee reads: Endometriosis Patient Advocate (see pic above). We have so many tools now to stand in solidarity. Our voice is getting louder.
Currently the most impactful way for Californians to get involved is to take this survey to make sure their voice is included. We have a lot of momentum here, it’s an exciting time.
In general though, show support by believing someone, just listening and having empathy is huge. You now know about resources, buy them for someone in need. See beyond the “I’m fine” because someone you know is definitely NOT fine and in need of support.
Don’t buy into the “my doctor said mine is the worse ever” - unless your doctor is an excision specialist, this is trite. We are all suffering, ask an expert, they see “the worse ever” case after case after case. No one deserves to suffer, we are in this together enduring an assault to our bodies rated amongst the top 20 MOST painful symptoms by the NHS, and then told we are imagining the pain.
The universal thread is that we are not in competition of trauma, but stand together in compassion of trauma, all wearing masks to protect those we love and the lives we are at risk of losing. Whenever one person speaks up, it lessens the burden for the next. #FemTruth
How can readers connect with you (Ex. Instagram, Twitter, Facebook, Website, etc.)?
Facebook @FemTruth: https://www.facebook.com/MyFemTruth/
Facebook @Silvia Wheatley Young: https://www.facebook.com/silvia.w.young
Facebook @UniteEndo: https://www.facebook.com/uniteendo/
Guest Chronic Illness Blog coming soon! Guests will be asked to provide information about their illness and must haves while experiencing pain and other symptoms.
Samantha Bowick, MPH is the author of "Living with Endometriosis: The Complete Guide to Risk Factors, Symptoms, and Treatment Options" and "Living with Alpha-1 Antitrypsin Deficiency" as well as a fellow sufferer of multiple chronic illnesses and patient advocate.Write something about yourself. No need to be fancy, just an overview.