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Written by Amanda Dennison, as told to Erica Rimlinger
April 13-19, 2025, is STI Awareness Week.
When I first saw the lesion, I knew it looked familiar. After working in HIV and sexually transmitted infection (STI) prevention, I’d seen enough pictures to recognize herpes. When the first signs of a sore appeared, I was confused and thought: “That can’t be right.” So, I followed the advice I’d often given clients: I used a hand-held mirror to get a closer look. The lesion in the mirror was definitely, without a shadow of a doubt, a textbook picture of a herpes lesion. I couldn’t believe it.
I immediately called my gynecologist. By the time I saw her, my outbreak had exploded to the herpes version of a worst-case scenario. Nerve pain spontaneously shot from my lower back to the tips of my toes. The outbreak triggered pelvic inflammatory disease, and the swelling made urinating painful and difficult. I didn’t leave my home for days.
To my surprise, my gynecologist minimized my situation, telling me, “Maybe it’s not herpes.” I assured her she didn’t have to downplay my concerns. I spoke to people all the time about STIs. I was the person who gave out condoms and lube at correctional facilities and rehab centers. I was the person who showed slides of STI symptoms. I’d seen herpes. I knew herpes. And now, I appeared to be getting formally acquainted with herpes.
After taking a gasp-inducing swab of a lesion, my doctor told me I’d have to wait several days to get test results. Because I was in so much pain, she started treatment immediately, giving me an antiviral. The following week, her office called. Having worked as an STI clinic employee who gave people their test results, I knew that call script. If the result was positive, I wouldn’t be given my results over the phone. I’d be asked to return to the office to discuss them in person with my doctor.
While I was not surprised to learn I’d be making a return visit to the doctor, I was surprised at my doctor’s nonchalant attitude toward the diagnosis. I’d just learned I had an incurable STI that would impact my health and relationships for the rest of my life, and my doctor kept telling me, “Don’t worry! You can still have children.” If she’d asked, she’d have known I never planned on having children, but I did plan on continuing to have relationships. She didn’t ask about my sexual history or give me information on how to disclose my diagnosis to past and future partners. “Don’t worry about it,” she said. “It will clear up.” She gave me refills on the outbreak-prevention medicine and left me alone with a raw, burning shame.
I felt like a professional fraud. How am I supposed to prevent STIs in the community if I can’t prevent them in myself? Through my fog of shame and self-blame, I didn’t give myself the grace and empathy I gave my clients. And I could have taken some solace from the statistics surrounding STIs. The fact is condom use prevents STIs just 95% of the time when used perfectly. The only 100% guarantee against STIs is abstinence.
Even though condoms significantly reduce contact, they don’t cover every part of the body involved in sex. Also, you don’t have to be experiencing an active outbreak to give someone herpes, and if you never experience an outbreak, you might never know you have it. Even STI testing doesn’t regularly include herpes screening.
I’d just become one of the nearly 1 out 5 people who has been diagnosed with herpes, and while I’d never look down on a client, I had never considered how much they might be looking down on themselves.
The professional shame was joined by a sense of personal shame and dread as I prepared to call my former sexual partners. I was at a time in my life when I was dating regularly, so I didn’t know how or when I contracted herpes.
I called my most recent relationship partner first. He was someone I still considered a close friend. As I dialed, I worried I’d be a huge disappointment to him. What if he no longer wanted to be friends? What if he was disgusted with me, or angry?
I’m glad I called him first. I exhaled fully when he reacted with support and kindness. He made me feel like there was nothing broken or dirty or wrong with me. His reaction was exactly what I needed to work up the nerve to continue calling former partners. Wishing I had a strategy or a script, I muddled through the remaining calls. Some went well: Others did not.
I couldn’t bring myself to reopen the apps and date for several months after my diagnosis. Finally, I overcame my fear, and decided I would share my diagnosis after we’d moved off the app to texting, but before we’d gone on an in-person date. My first in-person date after my diagnosis told me he was fine with my herpes when I disclosed it over text but asked me, in all seriousness, if he could catch herpes when our fully clothed legs accidentally touched under the table at the restaurant. It was our last date.
Amanda in Vancouver with her partner, Keith in 2024 (Photo/Kayla Beiler Photography)
That experience, while strange and disappointing, triggered an important shift in my perspective. This is my diagnosis and I have the knowledge, so my new dating rule was this: I would not allow anyone to make me feel less-than. My diagnosis was part of my life, but it wasn’t me. For the first time, I felt I was taking control of the narrative.
Nearly four years after my diagnosis, during a work meeting, as we discussed the need to find more STI patient advocates to share their stories, I wondered if I should come out as a patient myself. I went to my boss’s office after the meeting and said, “I’ll share my story.” I was a little nervous about sharing my diagnosis, especially since, earlier that day, I’d allowed myself to be outed as queer when I won an award for queer women. (I hadn’t been hiding my sexual orientation or even my STI diagnosis: I just hadn’t discussed these topics at work before.) My boss agreed to let me tell my story, and with my published blog, I felt I had fully taken ownership of my diagnosis.
When I was first diagnosed with herpes, I felt personally and professionally defeated. I asked myself how I would find love, and if I even was worth loving. That mindset is so far from the truth of my life now. I have an amazing partner, and we’ve created a great life together. I won’t minimize my herpes diagnosis: It’s significant and it can be devastating. Even with medication, outbreaks can happen. But I hope everyone with this diagnosis knows it won’t prevent you from getting what you want in life — and it won’t prevent you from loving and being loved.
A few months ago, my pharmacy moved the supplement aisle from the middle of the store to the back wall. Now, it takes up the entire wall. From vitamin A to zinc, it’s an alphabet soup of possibilities back there. You can spend hours perusing blends that promise better health and, most recently, menopause support. The menopause supplement market has grown over the past year and shows no sign of slowing down anytime soon.
Supplements are intended to give your body important things such as vitamins, minerals, botanicals or amino acids. So, products marketed as menopause supplements may contain substances you might need during menopause and other ingredients said to ease symptoms of menopause.
Of course, it would be great to shop online or stop at the store, pick out a supplement, and say bye-bye to the nights of hot, sweaty sleep and days of mind-boggling brain fog (two of the most disruptive menopause symptoms on our list). But it’s more complicated than that, and there are important things to consider before taking a supplement.
Read: From Hot Flashes to Night Sweats, a Rundown of Vasomotor Symptoms During Menopause >>
Dietary supplements are products designed to add to, or supplement, your diet or and can include things like omega-3 fatty acids, calcium and phytoestrogens.
Supplements are available in many different forms such as tablets, powders, liquid and gummies. You have to ingest supplements, but they’re not “conventional” foods.
Depending on the product, you can buy a supplement that has one ingredient or many ingredients, like a multivitamin.
Some of the different types of dietary supplements include:
Depending on the type, supplements can work by boosting levels of a substance missing or depleted in your body. Or, in the case of botanicals, herbs, amino acids or probiotics/prebiotics, they can work by creating an interaction between the supplement, and your body.
Products marketed as menopause supplements are typically blends of vitamins, minerals and herbs associated with easing symptoms of menopause.
“The most common reason for women turning to supplements is to make them feel better in perimenopause or menopause. Many of these women are having hot flashes, night sweats and insomnia,” said Mary Jane Minkin, M.D., a clinical professor of obstetrics, gynecology and reproductive sciences at the Yale University School of Medicine and a member of HealthyWomen’s Women’s Health Advisory Council.
Minkin said hormone therapy is one of the first lines of treatment to help ease symptoms of menopause. And although hormone therapy is safe for most people, it’s not an option for everyone. “Some women cannot take [hormone therapy], such as certain breast cancer patients,” Minkin said. “And some women are too anxious [about] or prefer just not to take [prescription] medications.”
Research is ongoing regarding the pros and cons of supplements for menopause symptoms. There is some data that shows certain supplements may help with specific symptoms of menopause. These can include:
It’s important to talk to your healthcare provider before trying anything new.
Currently, The Menopause Society does not recommend any dietary supplements for vasomotor symptoms (hot flashes and night sweats) due to a lack of strong evidence.
Supplements can cause allergic reactions and serious health problems and interact with other medications and supplements you’re taking.
Dietary supplements are regulated by the FDA but not in the same way prescription drugs are. It’s the responsibility of the supplement companies to evaluate the safety and efficacy of dietary supplements before the product is sold to the public to make sure it meets all the requirements.
After the product enters the marketplace, the FDA has the authority to review the product and its advertising and labeling to make sure there are no safety concerns, false claims or promises that the supplement will treat, diagnose, cure or prevent disease (which would make it a drug and subject to different guidelines).
Dietary supplement labels are also required to list supplement information, including serving size, number of servings per product and all dietary ingredients in the product.
While many of the supplement companies out there sell safe products that follow FDA guidelines, it’s possible that a company or product may be too good to be true, so it’s always best to do your own research and speak to your healthcare provider.
The Council for Responsible Nutrition, a dietary supplement trade organization, has a list of member companies who comply with regulations and also adhere to their own self-regulatory practices. You can also look for products marked with USP or GMP supplement certifications, which means the supplement has been verified by a third party.
With the amount of products popping up these days, menopause supplements aren’t going anywhere. So take the time to talk to your healthcare provider before taking supplements for symptoms of menopause.
This educational resource was created with support from Kenvue, a HealthyWomen Corporate Advisory Council member.
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Easter is a time of renewal, celebration, and delicious food shared with loved ones. But indulgence doesn’t have to mean compromising on your health goals. We have put a nutritious spin on traditional Easter fare with recipes that are as nourishing as they are festive. Our healthy Easter recipes will help you celebrate with flavor, color, and balance. Whether you’re planning a brunch, dinner, or an egg hunt picnic, there’s something here to delight everyone at your table—body and soul.
This appetizer is packed with protein and B vitamins from the eggs, as well as heart-healthy fat and fiber from the avocados.
Ingredients
Makes 12 servings (2 egg halves). Per serving: 130 calories, 10 g total fat (0 g trans fat), 185 mg cholesterol, 4 g carbohydrates, 7 g protein, 2 g dietary fiber, 120 mg sodium, 1 g sugar, 0 g added sugar.
Directions
Notes
Eggs take longer to cook at higher elevations, so keep that in mind depending on where you live. Fresh eggs are also more difficult to peel; to make it easy (and end up with a smooth, perfectly peeled egg), buy your eggs 1-2 weeks before you plan to make this recipe, if possible.
Serves
6-8
Ingredients
Instructions
Source: https://www.saveur.com/
Serves: makes one 8″ tart
Ingredients
FOR THE CRUST:
FOR THE FILLING:
Instructions
source: https://www.saveur.com/
Servings: 6
Ingredients
Instructions
Tip
This dish freezes well for up to six months
Source: https://www.thespruceeats.com/polish-braised-red-cabbage-recipe-1137527
No Italian dinner is complete without antipasto, which consists of cured meats, cheeses, olives, and veggies. And Easter is no exception! This recipe makes serving and eating antipasto even easier with the use of a skewer.
Ingredients
Directions
source: https://www.thepioneerwoman.com/
Sweet braid loaves, like this beautiful one, are a cherished Easter tradition in many countries. The three-strand braid symbolizes the Holy Trinity, while the colorful eggs represent rebirth and renewal.
Ingredients
source: https://www.thepioneerwoman.com/
Go ahead—celebrate with dishes as joyful and nourishing as Easter itself.
Disclaimer
The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
Slide 1
Mental Health Ups and Downs With Colon Cancer
Living with colon cancer may be hard on your mental health, but knowing what to expect may help
Slide 2
Waiting for a Diagnosis
If you’re concerned that you have colon cancer, waiting for an answer can be hard. As you wait, you may feel:
Slide 3
Anxiety and stress
Fear
Slide 4
After a Diagnosis
Going through colon cancer treatment may cause a wide range of emotions, including:
Fear
Anger and frustration
Slide 5
Hope
Slide 6
After Treatment
The relief of making it through colon cancer treatment may also be accompanied by:
Lower self-esteem
Loneliness
Slide 7
Anxiety and stress
Excitement and hope
Slide 8
Healthy Ways to Cope
Slide 9
Slide 10
Resources
National Cancer Institute – Emotions and Cancer
This educational resource was created with support from Daiichi Sankyo.
Slide 1
Mental Health Ups and Downs With Colon Cancer
Living with colon cancer may be hard on your mental health, but knowing what to expect may help
Slide 2
Waiting for a Diagnosis
If you’re concerned that you have colon cancer, waiting for an answer can be hard. As you wait, you may feel:
Slide 3
Anxiety and stress
Fear
Slide 4
After a Diagnosis
Going through colon cancer treatment may cause a wide range of emotions, including:
Fear
Anger and frustration
Slide 5
Depression
Hope
Slide 6
After Treatment
The relief of making it through colon cancer treatment may also be accompanied by:
Lower self-esteem
Loneliness
Slide 7
Anxiety and stress
Excitement and hope
Slide 8
Healthy Ways to Cope
Slide 9
Slide 10
Resources
National Cancer Institute – Emotions and Cancer
This educational resource was created with support from Daiichi Sankyo.
Tal como se relató a Marnie Goodfriend
Siempre me han gustado las cosas emocionantes. Cuando tenía 22 años, quería disfrutar la vida al máximo y me encantaban las tablas sobre nieve, viajar e incluso el puentismo. Era saludable y nunca me había dado nada más grave que un resfriado hasta que empecé a experimentar fatiga extrema, dolor de las articulaciones e hinchazón en mis piernas, pies, manos y brazos. Caminar, descansar o mantenerme de pie era difícil y ya no podía sujetar objetos. Después de unas semanas, el dolor se volvió insoportable, así que fui al consultorio de mi doctor para saber que estaba sucediendo.
El médico apenas revisó mi cuerpo y no solicitó ninguna prueba. Me dio ibuprofeno y me dijo que regrese si seguía teniendo dolor. Perder días de trabajo me estaba causando dificultades financieras y el dolor solo seguía empeorando. El doctor con quien tuve la consulta no investigó lo que estaba causando mi condición. En vez de eso, me recetó analgésicos más potentes. Dos meses después, no tuve ningún alivio y me obligaba a misma a ir a trabajar a pesar del dolor.
Un día, el dolor se volvió insoportable. Me desmayé y me caí de una silla en el trabajo. En la sala de emergencias, ni siquiera imaginaba que mi cuerpo estaba colapsando. Querían darme de alta, pero mi madre y mi abuela exigieron que me hospitalicen hasta el día siguiente y se hagan pruebas. Tenía escalofríos, una fiebre de 104 grados y dificultad para respirar. Finalmente me hospitalizaron y me diagnosticaron pericarditis (inflamación de la membrana alrededor del corazón) y neumonía. También hicieron una prueba ANA, que sirve para detectar trastornos autoinmunitarios. En mi cumpleaños 23, me enteré que la prueba ANA tuvo resultados positivos. En función de esa información y de mis síntomas, me diagnosticaron lupus.
Me mantuvieron aislada en el hospital por más de un mes con dosis altas de esteroides mientras trataba de procesar la idea de tener un trastorno debilitante que puede ser mortal. Una amiga del colegio tenía lupus y había visto cuan horrible fue para ella. Me preocupaba morir. Fue difícil asimilar que debía adaptarme a un nuevo estándar de normalidad, que tenía que hacer cambios en mi vida que nunca había siquiera considerado y lamentaba todo lo que no podría hacer. Fue una bendición haber trabajado en la misma compañía durante años porque me dieron permiso para ausentarme. Mis amigos y colegas me apoyaron enormemente, pero mi madre fue y sigue siendo mi pilar principal. En ese entonces nació mi primer sobrino, quien me dio fortaleza para seguir adelante.
Una vez que me dieron de alta, me mudé a la casa de mi mamá y entré en un estado de depresión. Todos los medicamentos, el dolor, las consultas médicas y las terapias físicas eran una carga enorme que debía asimilar. Al ver que estaba experimentando emociones intensas, mi reumatólogo recomendó que tenga una consulta con un terapeuta y me dio la información de contacto de un grupo de apoyo para pacientes con lupus. Ahí es donde encontré a mi gente y aprendí de sus experiencias con la enfermedad, lo cual cambió mi perspectiva por completo. Mi mamá empezó a cuidarme a tiempo completo sin dudarlo. Sé que eso no ha sido fácil para ella y siento un poco de culpa y tristeza de que tenga que cuidarme incluso en mi adultez cuando se supone que yo debería cuidar de ella.
Seguí trabajando durante dos años pero pedía permisos para ausentarme cuando mis síntomas empeoraban. Fue entonces cuando mi amiga del colegio murió por complicaciones de su lupus y yo desarrollé nefritis lúpica (lupus renal). Sin mi sistema de apoyo, hubiese pensado que pasaría lo mismo conmigo. En vez de eso, invite a algunos amigos a participar en la caminata contra el lupus de Lupus Foundation of America’s (LFA) en San Francisco. Estar en un lugar en el que miles de personas saben lo que estás experimentando y contar con el apoyo de familiares, amigos, colegas, patrocinadores y voluntarios fue motivador. Me inspiró para decir, “no voy a dejar que el lupus me venza”, así que empecé a trabajar voluntariamente para la organización, lo cual fue útil para convertir mi dolor en un propósito.
Tracy en la Walk to End Lupus Now de Lupus Foundation of America, San Francisco, octubre de 2023
El lupus es una enfermedad impredecible e incurable, y cuando me diagnosticaron, no habían medicamentos desarrollados específicamente para tratarla. Logré tener acceso a un equipo de proveedores de atención médica (HCP, por sus siglas en inglés), que incluía nefrólogos, nutricionistas y terapeutas, para controlar los síntomas. También aprendí a defender mis derechos y a encontrar proveedores de atención médica nuevos si otros no me atendían adecuadamente. Durante esta época, seguí trabajando a tiempo completo pero me despidieron y me convertí en trabajadora independiente unos años después de mi 30º cumpleaños. Perder el seguro médico de mi trabajo me afectó mucho porque eso implicaba que debía pagar la mayoría de mis cuentas médicas. En esa misma época, tuve un brote de lupus, que es cuando la enfermedad ataca un órgano o sistema de tu cuerpo. En esa ocasión, fue mi sistema gastrointestinal y perdí 100 libras de peso en menos de seis meses. Sobreviví comiendo solo arroz, agua y avena. La repentina disminución de peso causó atrofia muscular y debilidad extrema.
Tuve otro brote terrible durante la pandemia. Tenía un nuevo trabajo permanente que me encantaba cuando empecé a sentir fatiga. No pude caminar desde mi escritorio al baño y siempre tenía frío. A veces apenas podía levantar mi cabeza y caminar, sentarme o cualquier otra cosa me daba dolor de cabeza. Una persona del consultorio de mi proveedor de atención médica me dijo que debía asistir inmediatamente a una consulta porque mis pruebas semanales de laboratorio mostraban que estaba en peligro. No quería salir del trabajo, pero también se comunicaron con mi padre, quien me llevó rápidamente al hospital. Tenía anemia grave. Consecuentemente, recibí dos transfusiones de sangre y me hospitalizaron de nuevo por más de una semana. Mientras me recuperaba en mi hogar, empecé a perder mi capacidad para moverme y ya no podía cuidarme por mí misma. Estaba peleando para sobrevivir: No podía bañarme sin asistencia. Necesitaba ayuda para ir al baño. Perdí mi capacidad para caminar y tuve que volver a aprender a hacerlo con terapia física intensa. No he podido volver a trabajar y he estado discapacitada desde entonces.
El lupus puede ser una enfermedad muy solitaria. No quieres que la gente sienta pena de ti. Recuerdo que me preguntaban, “¿vas a morir? ¿Es contagioso el lupus? ¿Es como el SIDA?” Entonces, tratas de minimizar la enfermedad porque las palabras de la gente pueden herir y no quieres ser una carga para tu sistema de apoyo. Puedes sentir un dolor insoportable, pero empiezas a decir a la gente que el dolor no es muy grave. Podrías necesitar ayuda para caminar, pero no quieres pedirla. Puesto que el lupus es principalmente una enfermedad invisible, las personas dicen que no te ves enferma, incluso cuando sientes que te quemas por dentro. Este aislamiento es la razón por la cual tengo el compromiso de hacer que el lupus sea más visible trabajando como embajadora, concientizando y hablando con compañías farmacéuticas y legisladores acerca de financiamiento y apoyo. Uno de mis logros más importantes fue convertirme en coordinadora del grupo de apoyo para pacientes de lupus del área de la bahía de San Francisco de LFA, estableciendo un espacio seguro para pacientes con lupus para que reciban información del lupus, para que compartan información y recursos y para que los escuchen porque eso cambió mi vida, especialmente cuando recién recibí mi diagnóstico.
Actualmente, sé que puedo disfrutar una vida integral con lupus y quiero que otras personas también lo sepan. Todavía puedes florecer y tener alegría de vivir. Me apasionan actividades tales como mi club de lectura, conciertos musicales y tours gastronómicos. Si bien me dolió no poder ser madre, mis sobrinos son una luz muy brillante en mi vida y puedo darles mucho amor. Pasar tiempo con mi familia y ser su tía son las mayores alegrías de mi vida. Esto fue una prueba para mi fe, pero sigo rezando y confiando en Dios. Es lo más importante en mi vida y me ha dado fortaleza durante mi vida con lupus.
Este recurso educativo se preparó con el apoyo de GlaxoSmithKline, Merck and Novartis.
Have your own Real Women, Real Stories you want to share? Let us know.
Our Real Women, Real Stories are the authentic experiences of real-life women. The views, opinions and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect the official policy or position of HealthyWomen.
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As told to Marnie Goodfriend
I’ve always been a thrill seeker. At age 22, I wanted to experience life to the fullest, and I enjoyed snowboarding, traveling — and even bungee jumping. I was healthy and had never had anything more than a cold until I started experiencing extreme fatigue, joint pain, and swelling in my legs, feet, hands and arms. Walking, resting or standing was difficult, and I could no longer grip things. After a few weeks, the pain became excruciating, so I went to my doctor to get to the bottom of it.
The physician barely looked at my body and didn’t run any tests. They gave me ibuprofen and told me to return if the pain persisted. Missing days from work was causing financial strain, and the pain just kept getting worse. The doctor I saw didn’t investigate the root cause of my condition. Instead, they upped my medications to heavy-duty painkillers. Two months later, I had no relief and was forcing myself to go to work.
One day, the pain became too much. I passed out and fell out of my desk chair at work. At the emergency room, I had no idea that my body was shutting down on me. They wanted to release me, but my mother and godmother demanded they keep me overnight and run tests. I was shivering with a 104-degree fever and having trouble breathing. They finally admitted me, and I was diagnosed with pericarditis (inflammation of the membrane that surrounds your heart) and pneumonia. And they ran an ANA test, which helps detect autoimmune disease. On my 23rd birthday, the ANA test came back positive. Based on that information and my symptoms, I was diagnosed with lupus.
I was isolated at the hospital for over a month on high doses of steroids while trying to process having a debilitating disease that can be life-threatening. A high school friend had lupus, and I had seen that it was horrible for her. I worried that I was going to die. It was difficult to wrap my head around how to live a new normal, make serious changes to my life that I had never even considered and grieve all the things I’d never get to do. It was a blessing that I had been with my company for years and could take a leave of absence. My friends and co-workers were a huge source of support, but my mother was and continues to be my rock. My first nephew was also born then, which gave me the strength to keep moving forward.
Once I was discharged, I moved in with my mom and went into a state of depression. All of the medication, pain, doctor’s visits and physical therapy were a lot to take in. Seeing that I was experiencing intense emotions, my rheumatologist encouraged me to see a therapist and connected me with a support group for lupus warriors. That’s where I found my people and learned from their experiences with the disease, which completely changed my perspective. My mom became my full-time caregiver without hesitation. I know it hasn’t been easy for her, and I carry some guilt and sadness that she’s had to take care of me as an adult when it should be the other way around.
For two years, I continued to work but took leaves of absence when my symptoms worsened. Then, my high school friend died from complications from lupus, and I developed lupus nephritis (kidney lupus). Without that support system, I would have believed that would also be my fate. Instead, I invited a few friends to participate in the Lupus Foundation of America’s (LFA) Lupus Walk in San Francisco. Being in a space where thousands of people know what you’re going through and you are supported by family, friends, coworkers, sponsors and volunteers was empowering. It inspired me to say, “I am not going to let lupus beat me,” so I became a volunteer for the organization, which helped me turn my pain into purpose.
Tracy at the Lupus Foundation of America’s Walk to End Lupus Now, San Francisco, October 2023
Lupus is an unpredictable, incurable disease, and at the time I was diagnosed, there weren’t medications specifically developed to treat it. I built a team of healthcare providers (HCPs), from nephrologists to nutritionists to therapists, to help me manage its many symptoms. I also learned to become my own health advocate and find new HCPs when others weren’t providing adequate care. Throughout this time, I continued working my full-time job but was laid off and became a contract worker when I was in my early 30s. Losing my company health insurance was a blow because I then had to pay most of my medical bills. At the same time, I had a lupus flare, which is when the disease attacks an organ or system in your body. That time, it was my gastrointestinal system, and I lost 100 pounds in less than six months. I was surviving on rice, water and oatmeal. The rapid weight loss caused muscle atrophy and extreme weakness.
I had another terrible flare during the pandemic. I had a new permanent job that I loved when I started feeling fatigue creep in. I couldn’t walk from my desk to the bathroom and always felt cold. I could barely lift my head at times and walking, sitting — everything — hurt it. My HCP’s office told me I needed to see my provider immediately because my weekly lab tests showed that I was in danger. I didn’t want to leave work, but they had also reached out to my father, who rushed me to the hospital. I had severe anemia. As a result, I received two blood transfusions and was hospitalized again for over a week. While recovering at home, I began to lose my ability to move and could no longer take care of myself. It was a fight for my life: I couldn’t bathe myself. I needed help getting to the bathroom. I lost my ability to walk and had to relearn through intense physical therapy. I’ve been unable to work and have been on disability ever since.
Lupus can be a very lonely disease. You don’t want people to pity you. I remember people asking me, “Are you going to die? Is lupus contagious? Is it like AIDS?” So, you minimize the disease because people’s words can hurt, and you don’t want to be a burden to your support system. Your pain may be at a 10, but you will tell someone you’re at a six. You may need help walking but don’t want to ask for it. Since lupus is primarily an invisible illness, people will say you don’t look sick, even when, internally, you’re on fire. This isolation is why I’m committed to making lupus more visible by working as an ambassador and advocate and speaking to pharmaceutical companies and legislators about funding and support. One of my greatest accomplishments was becoming LFA’s Bay Area Lupus Support Group facilitator, creating a safe space for lupus warriors to be educated about lupus, share information and resources, and be heard — because that was life-changing to me, especially early in my diagnosis.
Today, I know I can live a full life with lupus, and I want others to know that as well. You can still thrive and enjoy yourself. I’m passionate about activities like my book club, music concerts and food tours. While I had to mourn not becoming a mother, my three nephews are such a light in my life that I can pour so much love into them. Spending time with my family and being an auntie are the greatest joys in my life. My faith has been tested, but I pray and trust in God. It is the most important thing in my life that has kept me strong throughout my lupus journey.
This educational resource was created with support from GlaxoSmithKline, Merck and Novartis.
Have your own Real Women, Real Stories you want to share? Let us know.
Our Real Women, Real Stories are the authentic experiences of real-life women. The views, opinions and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect the official policy or position of HealthyWomen.
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April is Autism Acceptance Month.
Like many women with autism, Dana Waters had no idea she was autistic until she was an adult.
“We really do look different,” said the psychologist and professor at Antioch University in Seattle. “The assessment measures developed as the norm were based on young white boys. The problem with early autism measures is they’re mostly based on behavioral analyses from family and teachers, and they might not catch certain behaviors from girls and women.”
This may explain why boys and men are more likely than girls to be diagnosed with autism.
While autism diagnosis rates have risen significantly over the past decade, adult women have seen the most notable increase — rising by 315% for women compared to 215% for men.
While researchers don’t know if more people are developing autism, the rise in diagnoses is thought to be related to more people recognizing signs of autism in women and moving beyond longstanding gender biases in autism screening.
“With autism typically being thought of as a ‘male disorder,’ we missed a lot of females who fit the criteria but didn’t display the stereotypical behaviors associated with the condition,” said Hannah Belcher, a lecturer and post-doctoral researcher at King’s College in London who was diagnosed with autism as an adult. “Females often show a more internalized presentation, meaning they are often missed or are dismissed as just ‘shy’ or ‘introverts.’”
For years, the male-to-female diagnostic ratio has been 4:1, but researchers believe it’s closer to 3:1. Other research suggests about 8 out of 10 autistic women remained undiagnosed at 18.
Signs of autism in girls and women can include social difficulties, repetitive behaviors, sensory issues, struggles with executive function and self-regulation, and repetitive behaviors.
A young girl with autism might “mask” her traits through behaviors and movement that wouldn’t necessarily raise flags to outsiders, like nail picking, counting in her head or performing other cognitive repetitive tasks. In contrast, hyperactivity, blurting out statements and visual stimming — often seen in boys — are among the signals parents and teachers might identify as needing further investigation.
Belcher and Waters also noted that girls can be better at learning social scripts and behavior. Because they might have friendships, socialize with others and maintain eye contact — which are skills that are known to be tough for many people with autism — people often miss the signs that they have the condition.
“Girls are socialized from a young age to fit in with others, be polite, quiet and empathic,” Belcher said. “The [stereotypical] types of behaviors that go alongside autism are less well tolerated in girls, and hence they learn to hide them. Studies have shown women with autism need to present with a larger number of behavioral problems than their male counterparts to get a diagnosis, even when core traits are the same.”
Research also shows white children and children from more privileged socioeconomic backgrounds are more likely to be diagnosed with autism at earlier ages than children of color and those from less privileged socioeconomic environments.
A childhood without a diagnosis can mean years of feeling like something is wrong but not knowing what. And those years of missing support and intervention services at critical stages of development can lead to worse physical and mental health well into adulthood. Treatment for the wrong conditions and a lack of treatment altogether are likely. Women and girls with autism are likely to have concurrent health issues, chronic pain, gynecological problems like dysmenorrhea (painful periods), and greater struggles with postpartum depression and menopause.
According to Belcher, autism isn’t often considered as a condition among girls and women until they seek help for other conditions, like anxiety, depression or eating disorders. Even then, they can be misdiagnosed, further delaying proper treatment and support. This may be a contributing factor to why suicide rates are also higher among women and girls with autism.
“Having a diagnosis can help you know why you are struggling and why you are different, and help you understand yourself better,” Belcher said.
“I was certainly one of the girls that blended in the woodwork,” Waters said. “I was one of those kids that fell through the cracks and did terribly in school. I just tried to hide and not get in trouble.”
Waters credits her sister with teaching her how to take notes and improve her study habits, which helped her finish her junior and senior years of high school with higher grades. She dropped out of college after three months, but returned later to earn an associate degree and become a veterinary technician. She said she enjoyed the job and performed well, giving her the courage to return to school five years later. This time, she developed a love for psychology, and got near-perfect grades in undergraduate and graduate school as she pursued that field.
Still, Waters didn’t think about autism until 2012, when one of her students told her he’d been diagnosed. Waters was surprised, thinking of popular culture depictions like Dustin Hoffman in “Rain Man,” or others who required significant physical and emotional support to complete daily tasks.
The more the student talked, however, the more she began to see some similarities in her own behavior. After taking an online quiz that left no doubt she might be on the spectrum, Waters said her wife even quipped “that makes a lot of sense,” when she shared her results.
“It felt a lot like my coming out process,” Waters said. “In hindsight you look and see things that were clear signs that I was autistic, but it was scary because even less was known about autism than there is now. Here I am, a clinical psychologist and I’m wondering, ‘Can I still do this?’ ‘Is this ok?’ ‘Are they going to take my license away?’ ‘What’s going to happen?’”
Waters went for professional testing and received a diagnosis that confirmed the online test. She finally told her department chair in 2019, and he responded with a hug.
With support from her institution and others, Waters was ready to help other women. She founded
The AWAKE Project to advocate for women with autism and has developed a thriving online community. She also is trained to diagnose patients in her private practice.
While the growing awareness of autism in adult women can help improve their quality of life, being able to get a diagnosis as early as possible can have a significant benefit on women’s long-term mental health.
“I have a lot of hope the zeitgeist is changing, especially with younger folks getting diagnosed and trying to destigmatize autism,” Waters said. “Even the discourse since I started The AWAKE Project is changing. My younger audience online is so ahead of me in the sense of understanding a neurodivergent mind, how it works and being able to help others.”
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Kristen Nuss: Beach volleyball player: 2023 Beach Volleyball World Championships was held in Tlaxcala, Apizaco, and Huamantla, Mexico, Bronze Medalist, FIVB Beach Volleyball World Tour she has won seven Gold, three Silver and one Bronze Medals.
Born and raised in New Orleans, Louisiana, Kristen first began playing beach volleyball during her sophomore year in high school; but her success in sports spanned much further than just on the sand. Kristen led Mount Carmel Academy to three indoor volleyball state championships as well as two basketball championships. Her high school career concluded senior year with her being named Louisiana Gatorade Player of the Year as well as New Orleans Sports Amateur Athlete of the Year.
All the while, it was beach volleyball that progressively set in as her number one love as she competed in various tournaments all throughout her high school years. She quickly committed to LSU Beach Volleyball during her junior year without talking to any other programs, as it had always been her dream to compete as a Tiger. Kristen stuck to her winning ways at the collegiate level, as she amassed the most career wins in LSU history, became the winningest player in collegiate beach volleyball history, and ensured her team appeared in the NCAA championship tournament every year of her tenure. Kristen, along with her teammate Claire Coppola, also became a two-time USAV pair’s champion.
Kristen graduated in December of 2020 but opted to return for one more semester of eligibility due to Covid-19 exceptions. Her winning ways continued but it was now with Taryn Kloth alongside her. The two had an astonishing season as LSU’s court 1 pair. They garnered a historical 36-0 record and helped lead the Sandy Tigs to a 4th place finish in the NCAA tournament.
Kristen is pound for pound one of the best players in the world and proven to compete on the worlds’ stage with anyone. Her continued development defensively tantalizes the opponents and captivates the audiences. Their growth and team chemistry has propelled TKN into the top seed representing USA Volleyball at the 2024 Paris Olympics.
Kristen Nuss (born December 16, 1997) is an American beach volleyball player, currently competing in the FIVB World Tour/Pro Beach Tour. She competed at the 2024 Summer Olympics in Paris with Taryn Kloth.
Nuss was born and raised in New Orleans, Louisiana to Audrey and George. She is the youngest of four children, with older brothers Pete, Jeffrey, and Jordan.
Nuss was a multi-sport athlete throughout high school, leading Mount Carmel Academy to three indoor volleyball and two basketball state titles, though beach volleyball was the sport she enjoyed most. Nuss was a LHSAA Division I MVP and Gatorade Player of the Year candidate for indoor volleyball.
Nuss attended Louisiana State University starting in 2017 and quickly found success on the sand with fellow freshman Claire Coppola. The pair accumulated nine wins over NCAA ranked teams, including seven against top-10 ranked teams. At one point during their freshman season, they won 20 of 21 matches, finishing with a 27-7 record and being named to Volleyballmag.com’s All-America team. The pair’s success grew in following seasons, compiling records of 31-8 and 33-4 over the following two seasons, winning the USA Volleyball Collegiate Beach Championship, CCSA Pair of the Year, AVCA All-America honors in back-to-back years. They were the first pair to win consecutive CCSA Pair of the Year awards. Their junior season also saw them top the Tigers’ individual wins list at 81. Their 2020 season saw them reach the 100 wins mark, becoming the third pair to do so behind USC’s Sara Hughes and Kelly Cheng and UCLA’s Megan and Nicole McNamara.
During the COVID-19 pandemic, Nuss began training with Taryn Kloth, an indoor volleyball player for Creighton who had transferred to LSU. Despite having never played beach volleyball before, the pair went on to finish the 2021 season with a 36-0 record, the second ever team to complete an undefeated season and the NCAA title.
Nuss graduated with a Bachelor of Science degree in kinesiology, finishing her college career as one of the most decorated NCAA beach volleyball players ever with 136 total victories, three CCSA Pair of the Year and AVCA All-American awards, two USA Volleyball Collegiate Beach Championships, and Volleyballmag.com Player of the Year.
Nuss and Kloth turned professional upon graduating in 2021, with the goal of qualifying for the Olympics in Paris, but opting to keep their base in New Orleans instead of moving to Southern California. They initially struggled to qualify for international tournaments, but eventually broke through with Gold in the 2022 BPT Coolangatta Futures. Shortly thereafter, the pair beat the Tokyo Silver Medalists, Australians Mariafe Artacho del Solar and Taliqua Clancy, en route to the Gold at the 2022 BPT Kusadasi Challenge (21-12, 17-21, 17-15).
The pair started 2023 with wins in two of their first four World Tour tournaments, and followed it up with three medals in five tournaments during the European leg of the tour schedule. In the World Championships, the pair reached the semifinals, losing in three sets to their American counterparts Kelly Cheng and Sara Hughes. They rematched with the Australian Olympic silver medalists Mariafe and Clancy to win bronze (15-21, 21-19, 15-8) at the World Championships. Nuss and Klothe then cruised to win Gold at the World Tour Finals, not dropping a single set, to reach the No. 2 FIVB ranking and qualify for the Olympics in Paris.
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Did you know that women are more likely to have an autoimmune disease than men?
As many as 4 out of 5 people with an autoimmune disease are women.
What is an autoimmune disease?
An autoimmune disease develops when the body’s immune system attacks its own healthy cells, organs or tissues.
Autoimmune diseases can affect almost any tissue or organ in your body
Skin
Joints
Blood vessels
Muscles
Your symptoms may vary based on which parts of your body are affected.
A person can have more than 1 autoimmune disease.
Autoimmune diseases are chronic and can be serious
There are no cures for autoimmune diseases, and they can seriously impact your quality of life without proper treatment.
How do you treat autoimmune diseases?
Treatment varies based on:
Early treatment is key
Getting treated early can help prevent organ damage
Why are women more likely to get autoimmune diseases?
Women have lots of hormonal changes that affect the immune system and can lead to autoimmune disorders.
The 3 main hormonal transitions are:
Autoimmune diseases are more likely to happen when hormone levels change and during long periods of stress.
Other factors include:
Fluctuating hormones + immune changes + transition periods = Greater risk for autoimmune diseases
The most common autoimmune diseases in women include:
Autoimmune diseases are on the rise around the world …
… But rarely talked about as a women’s health concern
Talk to your healthcare provider if you think you have an autoimmune disease.
This educational resource was created with support from Viatris, a HealthyWomen Corporate Advisory Council member.
The theme for World Health Day 2025 is ‘Healthy beginnings, hopeful futures.’ This year’s theme will kick off a year-long campaign on maternal and newborn health. This initiative will encourage governments and the healthcare sector to intensify their actions to eliminate preventable maternal and newborn deaths.
image source: https://www.who.int/
Here are seven simple but powerful habits that create strong starts for mothers, babies, and families—laying the foundation for a healthier future generation.
Every mother deserves a safe pregnancy. Every newborn deserves a strong start. And every small action—from a shared meal to a timely checkup—can shape a healthier, more hopeful future for generations to come.
This World Health Day, let’s champion the quiet, powerful beginnings that make all the difference.
Disclaimer
The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.