Chronic Illness Rare Diseases

Chronically Ill? Let Your Voice Be Heard

It's easy to feel powerless after diagnosis, but don't keep quiet about your experience. Ask yourself: what am I doing to create a better tomorrow?

This post is part of a collaboration with Inspire, a healthcare social network with more than one million patients and caregivers.


I was 15 when my parents sat me down at the dinner room table to tell me that my mom had a rare condition known as Huntington’s Disease (HD). I don’t remember much besides being angry and in denial about the situation. Despite the fact that I was told my mother had it, the disease was still, to me, largely an abstract. I didn’t understand the disease, or the impact it may have on my future.

I certainly never seriously thought that I might one day inherit her disease.

HD is a life-shortening neurological disease that slowly deteriorates a person’s physical and cognitive abilities. It is like having ALS, Alzheimer’s, and Parkinson’s all rolled up into one. But while I could see for myself how Huntington’s Disease affected my mother, thanks to her increasingly frequent mood swings, it wasn’t until I went to college that I understood the genetic component of HD affected me as well.

I realized I had a 50/50 chance of inheriting the disease and ending up like my mom. I pondered whether or not to go through genetic testing: was it better to know, or not to know?

Ultimately, I decided I didn’t want to live in the unknown. I was tested my sophomore year in college. When the results came back, the neurologist simply said: “Seth, your genetic test came back positive for Huntington’s Disease.”

When the results came back, the neurologist simply said: “Seth, your genetic test came back positive for Huntington’s Disease.”

But just like when my parents told me about my mother’s diagnosis, I don’t remember much about what he said after. I was numb: all I could focus on was that I was destined to slowly degrade over the years both physically and mentally, until–like my mom–I was so ill that I needed permanent nursing care.

It took me around three years before I realized I couldn’t keep quiet. By not telling people like my sister, I was robbing her of a chance to make her own choice regarding getting tested. I decided that I wanted to use my journey with Huntington’s as a platform, letting other people who, like me, felt isolated by their condition that they weren’t alone. And that platform needed to start with the people closest to me: my family.

I’m not saying it was easy. I was nervous about how my family would react, especially my mother, who I thought might feel guilty. But once telling them the news, I felt like a weight was lifted off my shoulders.

In March 2015, my mom lost her 17-year battle with Huntington’s Disease. She was, and still is, my inspiration. Memories of her contagious smile, sense of humor, and positive outlook have inspired me every day as I, too, fight our disease. Her own bravery in the face of Huntington’s Disease drove me to become more involved in the rare disease community. From doing a talk at TEDxNatick in my hometown of Natick, MA to sharing my HD journey in front of 600+ R&D staff at Sanofi Genzyme, it gave me a better sense of what I wanted to do with my career: to connect those impacted by a rare disease with the proper educational resources and social, emotional support.

You need to ask yourself: What’s your next step to a better tomorrow?

In the face of a debilitating disease like Huntington’s, it’s so easy to feel powerless. But when things get tough, you can’t give up. You need to ask yourself: What’s your next step to a better tomorrow? I’ve learned that you can be an effective advocate in what might seem like modest ways: for example, fundraising, starting a blog, speaking to others about your experience, or becoming involved in your community both socially and politically.

The first step, though, to becoming empowered is to speak up. Let your voice be heard.


Seth Rotberg is a rare disease advocate and motivational speaker who sits on the board of trustees for the Huntington’s Disease Youth Organization. He is partnerships manager at Inspire.

Chronic Illness Disability

Is Marie Kondo and KonMari Compatible With Chronic Illness?

After watching Netflix's new show about the life-changing art of tidying up, I tried it for two weeks to see if it was compatible with my disability. Here's what I learned.

It was another one of those days: a Netflix-and-chill day, in bed, because of a flare-up. My social had been abuzz about Tidying Up With Marie Kondoand my love for reality-TV home makeover shows made me interested. So I decided to binge the first season while I lay in bed.

If you’ve never seen Tidying Up, it’s a show in which Marie Kondo, founder of the KonMari Method, enters people’s home and teaches them to declutter and clean their spaces, using the main criteria that one should only keep objects in their life if they inspire joy.

It’s a nice theory, but as I watched Kondo and the families she was working with energetically clean their spaces, I found myself growing frustrated. None of these people had health conditions. None of these people were disabled.

I looked around my room at the heating pads on the floor and clothes stacked on my dresser, and wondered how I’d ever find the energy to clean in that manner. The KonMari method seemed like yet another system that worked well for able-bodied individuals, but overlooked the unique realities and needs of disabled individuals.

I decided to try the KonMari method myself for two weeks to see what it was like for a disabled person. Here is what I learned.

Lesson One: Don’t Mess With My Bed

The process started off simple enough. Marie Kondo says to start your tidying up process with clothing, and in the show, the first step many of the families take is to take all of their clothes and throw them on the bed to sort. So I pushed open my closet and started tossing everything onto my bed.

Throw all your clothes on your bed to sort. It sounds easy, disability agnostic. But as a person with chronic health issues, I found that as the pile got bigger and bigger, I became increasingly anxious.

The families Kondo worked with on her show seemed to have no issues covering their beds with piles of clothes, but as a disabled person, this is the main place I go to when having a bad day. Like many sick and disabled people, my bed is my sanctuary, a safe space, and a place of refuge. And here I was, burying it.

Like many sick and disabled people, my bed is my sanctuary, a safe space, and a place of refuge. And here I was, burying it.

Nearly in tears, I realized that not only did I have to sort through all of this, but I had to do so before I could get to my bed again, which would require a level of energy I wasn’t sure I had.

Marie Kondo suggests starting by finding something you’re certain you want to keep, that sparks such joy that it makes you go ching! when you hold it. That’s your baseline, the feeling you want everything you decide to keep to make you feel. I dug through the pile and grabbed out a pink sweater with a penguin on it, a velvet jumpsuit, and a red and yellow plaid dress – all things that definitely spark joy in me. Soon my ‘yes’ pile was growing with all those pieces of clothing I revert to over and over again, as I tossed into another pile the things I wasn’t so thrilled about.

It was then that I hit a wall, both physically and emotionally. I’d not been at this very long, but I’d reached my body’s max, and without many other options, I curled up amongst my piles of clothes. I realized there was no way I was going to have the energy to do all of the sorting, along with the folding and putting away, on the same day, which is what KonMari suggests.

I needed to come up with a different plan.

Marie Kondo walking by a neatly organized closet.

KonMari asks you to only keep items in your life if they spark joy, but is it compatible with disability?

Lesson Two: It’s Okay To Shift The Rules

For a lot of critics, KonMari comes across as inflexible in its philosophy of austerity. It feels, frankly, like a lot of the pop philosophy du jour: both too strict and too whimsical, somehow, to survive a brush with the reality that life is messy and conflicted.

But as I lay there, I remembered the tender way Kondo worked in Episode 4 with a recent widow, Margie. In the episode, Margie expresses a need for dealing with her deceased husband’s belongings in a different way. Instead of trying to convince her to go against her instincts, Kondo says: “I understand. Let’s shift the rules for you.”

I imagined Kondo seeing me curled on my bed, and decided that she would understand if I shifted the rules. With that I put my clothes that sparked joy in the closet, shoved all the rest of the mountain back haphazardly into my drawers, and decided to come back to my tidying tomorrow, after a much-needed nap.

The KonMari method, like many things that I come across in my daily life, requires modifications and adaptations because of the limits of my body.

The KonMari method, like many things that I come across in my daily life, requires modifications and adaptations because of the limits of my body. For the rest of my time tidying clothes, I worked on one drawer of clothes at a time. I found that was the most my body could handle in a day, and it helped me to not get so overwhelmed by the process as well. I’d dump out a drawer and sort through, discarding some items and keeping all those that sparked joy.

And it paid off.

I did not anticipate how much pleasure I’d find in folding my clothes into tiny rectangles. I was so excited with the first shirt I folded that I giggled out loud! The process of folding my laundry, which I’ve never much liked before, now brings me great satisfaction and has become a new meditative process for me. By sitting at my kitchen table to fold, I can use Kondo’s method without the pain of bending.

Marie Kondo folding clothes.

I was skeptical at first, but Marie Kondo’s emphasis on clothes-folding really did make me happy.

Lesson 3: Your Things Aren’t Who You Are

KonMari’s emphasis on mindfully going through your possessions, object by object, really makes you think not only about what you want to keep, but why. As I worked through the process, I realized I had kept many things around for reasons besides usefulness or joy, even if I’d convinced myself otherwise.

For example, nostalgia, as if that pair of shoes could transport me back to a different time before my spine had begun fusing itself together. I’d also kept many things from a scarcity mentality, fearing that if I got rid of them, I might not have them at some unexpected time in the future when I needed them, but wouldn’t be able to afford to replace them. And some objects I held onto, not because they sparked joy, but because I felt they were somehow connected to an identity I feared I had left behind in my illness, such as the books I’d used to write my thesis. If I let them go, was I also letting go of my identity as an able-bodied person?

Marie Kondo is right: things are not what make us who we are.

But Marie Kondo is right: things are not what make us who we are. I can appreciate the time I was in school and know the hard work and effort I put into my academics without having the books taking up my physical space. I can recall the joy and confidence of walking in the heels my body no longer can handle wearing without them housing dust bunnies in my closet. I can remember my past without living in it.

Conclusion

During the two weeks I followed the KonMari method, I was able to tidy my clothes and my books. However, I was only able to do this with pretty significant modifications that allowed me to break the tasks into much smaller pieces.

Is KonMari out of touch with the needs of the chronically ill and disabled? Yes and no. I was skeptical at first, but the philosophy of KonMari is one anyone can practice, even if they have to change the rules to accommodate their unique challenges. At the same time, I think Marie Kondo might underestimate the size of the mountain that people with chronic illness have to climb when following her method.

For me, the process of putting everything in one central location and physically touching each item before deciding if I keep it or not just didn’t turn out to be feasible. It’s a lot to ask even an able-bodied person to go through literally everything they own to appraise its value in their life, but for someone with a chronic illness, the energy required multiples tenfold.

Is KonMari even worth it to me, as a person with a health condition? I’m not sure it is.

And that brings up another question. Is KonMari even worth it to me, as a person with a health condition? I’m not sure it is. While I was able to sustain Marie Kondo’s methods for a few weeks, long-term, I think I’ll revert to my organizational ways, because while they might not be as aesthetically pretty, they prioritize energy conservation and pain management… things that are infinitely more important to me as a disabled person.

Several days ago the KonMari.Co Instagram posted a photo with the caption: “The space in which we live should be for the person we are becoming now, not for the person we were in the past.” Instead of my space being crammed with reminders of my past life, it’s important to fill it instead with things that reflect the person I am now and want to become. And maybe the method I use to get there doesn’t really matter.

Chronic Illness

Raising Your Kids With A Giving Heart, Despite Chronic Illness

After struggling through her son Ashton's kidney disease and her own health challenges, it's more important than ever for Amanda Zari to raise her kids with a giving heart.

When Ashton Zari was only four, he started asking for his birthday to be turned into a fundraiser, now called Ashton’s Birthday Wish, for the Ronald McDonald House of Central Ohio. In the last four years, Ashthon has raised over $40,000 in donations, organized face painting parties for the other kids at the home, volunteered his family to make dinner for the other residents, started a bathing suit closet for kids who didn’t know to pack one for the splash pad, met the President, and has written and illustrated a children’s book called How I Became a Superhero.

Ashton’s passion for helping families and other children at the Ronald McDonald House is inspired by his own experiences. Ashton was born with Bilateral Urinary Reflux, which means urine flows backwards from the bladder into the kidneys causing urinary tract infections and, when left untreated, kidney damage. Because Ashton was almost three years old before doctors realized what was going on, he now has Chronic Kidney Disease and Idiopathic Constipation. In the last 5 years, he and his family have spent close to 300 nights at the Ronald McDonald House of Central Ohio while receiving treatment at Nationwide Children’s Hospital.

Friends and family often joke that keeping up with Ashton’s fundraisers and service project ideas can be a full-time job for his mother, Amanda Zari. But Amanda, who also has two younger children, insists she is always willing to support Ashton’s wild ideas because she knows helping others is how he stays motivated. She explains that Ashton, a child with chronic pain and illness, needs those moments as often as possible.

Ashton Zari, and his mom, Amanda.

Amanda will be the first to tell you, though, that she hasn’t always been so willing. While today she considers it part of her life’s purpose to help other families on similar journeys, her motivation is fueled by memories of how dark her life was when their family first got the news of his illness.

Folks recently chatted with Amanda Zari about how her family navigates this difficult path and what inspired them to focus their energy on helping others. Our conversation has been edited for clarity and brevity.

You didn’t find out Ashton was in kidney failure until he was almost three, but there were signs all along that something was wrong. What led up to his diagnosis?

As a baby and toddler, Ashton cried all the time. He would get these random fevers and my husband, Anthony, and I would take him to the doctor, but they kept telling us he just had an ear infection or probably just a virus.

When I was 16 weeks pregnant with Addison, our second child, Ashton had been sick for almost three weeks. I took him to the pediatrician three times, and each time I was told it was just a virus. Eventually the fever spiked to 104.9, and I decided to take him to Urgent Care.

The doctor came in the room and I just started sobbing. “I’m not going to lie to you,” I said. “I’ve had him at the doctor’s three times in three weeks. This little boy is sick and no one is listening to me.”

“I’m not going to lie to you,” I said. “I’ve had him at the doctor’s three times in three weeks. This little boy is sick and no one is listening to me.”

They had him pee in a cup, they ran labs, they did x-rays of his urinary tract, and they did a renal ultrasound. Finally the doctor came back in and told me, “Amanda, your little boy is very sick. He is in kidney failure.”

Within two weeks, we were meeting with doctors at Nationwide Children’s Hospital in Ohio. His first surgery was when I was 36 weeks pregnant. No one wanted me to travel because they were afraid I would go into labor, but I had to be there. A week after we got home, I had Addison.

But then you had your own health scare which led you into a pretty dark place. What happened?

I did not take care of myself during my pregnancy. I pretty much sat around and cried, feeling bad for myself because my little boy was sick and might die. I wasn’t exercising, and I wasn’t sleeping. I was going to work and crushing it, but when I came home there was nothing left.

Addison was born, and she was perfect, but everything in my life was so out of control that I became determined I was going to breastfeed her —because this was something I could control. I already hadn’t been sleeping, but now I was setting my alarm for every two hours to nurse her. When she was just four weeks old, I found out I had to return to work or we would lose our family’s health insurance – it wasn’t a choice.

The doctors discovered I have a disorder called Addison’s Disease, just weeks after my daughter Addison was born.

I was only back at school teaching for a week when I started having seizures that led to me spending eight days in a medically induced coma. The doctors discovered I have a disorder called Addison’s Disease, and I am telling you that God is up there laughing because I’m diagnosed with Addison’s Disease just weeks after Addison was born. Essentially, what it means is that my body doesn’t produce enough cortisol. So when I was putting my body under all that stress, it didn’t have what it needed to deal with it, so it shut down.

When I woke up, I didn’t recognize my husband or know who my children were. I didn’t even know I lived in West Virginia. All of my muscles had atrophied, and I had to relearn everything – how to walk, tie my shoes, and feed myself.

It took about six weeks for my memory to come back, and I had to move back in with my mom because I needed full time care. It was demoralizing. She was having to take care of both me and my children, and that’s not at all who I am. I was angry, and no fun to be around. I wasn’t the person I am today or the person I was in college. I was a bitter, sour version of myself.

A woman holds her newborn baby while crying immediately after birth.

Amanda with her daughter, Addison, after her birth.

How did you get through that time?

On January 1st, 2015, about nine months after my seizures, my very sweet friend came to me and said, “I’m tired of you sitting here… You are not showing up for your family. This is not you.”

She started dragging me, three times a week, to the gym. I went begrudgingly, at first, but eventually that is where I began to find myself again.

I’ve learned that when you hit hard times, rock bottom, you’re going to come out a giver or you’re going to come out a taker.

In the beginning, I felt like I was going to stay at the bottom of that ditch forever, but I found a community of people who loved me when I was unlovable and they helped me see things could get better. After a year, I stopped focusing on being sour and decided to focus on positivity so that when we got devastating news again, instead of going back into the ditch, we could acknowledge it sucks and start asking what we can do for other people.

I’ve learned that when you hit hard times, rock bottom, you’re going to come out a giver or you’re going to come out a taker. There’s not a whole lot of in between. You’re either going to be the person that sits on the bottom or you’re going to be the person who comes out fighting, even if it’s begrudgingly, so you can help other people fight it out too.

Amanda credits her work in the gym as giving her the strength to get through her own health and mental health challenges.

In what ways are you and Ashton using your unique situation to encourage others?

Inspired by everyone who had helped me at the gym, I decided to use all of that time sitting in the hospital with Ashton to get my personal training certification. I started making training plans for the other moms  that can be done from the hospital bedside, and leading exercise classes and healthy lifestyle challenges.

Ashton and I sort of fed off of each other because we were both going through a really hard time, and we will often joke that the Phoenix is our spirit animal because we sort of came out of the ashes at the same time, asking, “What can we do?”

“How can we serve the families that are going through the same things we are?”

I was making Facebook videos about body image and self love. Ashton began to take notice of this and realized, “If you can encourage people, so can I.” So he started making his own “How To Be Happy” videos.

Ashton’s Birthday Wish was eventually born out of that idea. We started it, with his fourth birthday, as a way to give back financially to the Ronald McDonald House, but it has made an evolution over the last four years. We’ve become very service based and we’re constantly asking, “How can we serve the families that are going through the same things we are?”

Amanda and her kids.

Ashton has done some pretty amazing things, but I am sure a lot of the work of implementing his ideas falls onto your shoulders. Do you ever say no to his ideas?

No, I don’t. There is no way to describe his life other than it is hell, but his cup is filled by serving people at the Ronald McDonald House — whether it is through raising money, putting out an inspirational video, writing cards to other kids, or writing a book.

My son inspires me all the time because he dreams big, and he very rarely falls short.

His cup is filled by that. So my job, as a parent, is to help him. I am so proud of him but I can’t take any credit for any of his ideas. He inspires me all the time because he dreams big, and he very rarely falls short. I have never met a child with his work ethic.

How have you reconciled the dreams you had for your family with the life you have been given?

This is a daily battle for me. I always knew I wanted to have kids, and I always knew I wanted to teach. Everything in my life was building up to that. I was going to get married, teach, and have children. I had my whole life planned out. When we found out Ashton was sick, and how sick he really was, that was one of the most soul crushing times for me because I realized my life was not going to look like what I had always imagined.

I wouldn’t know this joy, and I wouldn’t appreciate the moments where we belly laugh until we cry if I didn’t know how hard life can be.

There are still days that I look on social media and see my friends’ kids playing tee ball or going to school events. The jealousy still flares every once in a while, but what I have found is that there is so much beauty in day to day life. Sometimes it takes another second for us to sit down and look for it, but I can tell you that I appreciate the little special moments so much more than I would if I had the dream life that I expected. I wouldn’t know this joy, and I wouldn’t appreciate the moments where we belly laugh until we cry if I didn’t know how hard life can be.

The Zaris at Ronald McDonald House at Halloween.

When all of this is said and done, what lessons or memories do you hope your children come away from this with?

I hope that they come out of this with a sense of resiliency. We do our best to have a routine and plan. Sometimes, though, we just have to roll with the punches and make the best of it. But we do that by having dance parties while we cook pancakes, singing really loud in the van when we’re driving, and cherishing every moment we get at home because we’re on the road so much.

I also hope they always keep the servant heart they grew up with, seeing us giving when we have so little. I hope they continue to constantly try to bless other people because anything that we’ve done for other people, God has blessed us back with five or six times. I hope they come out with just a sense of no matter how hard your life is, there are things you can do for other people.

To learn more about Ashton’s Birthday Wish, visit AshtonsBirthdayWish.org

Chronic Illness Essays

An Ode To My Asthma Inhaler

How could I have spent so many years looking down on what just might be one of the greatest inventions ever?

The past four months have been hard on me. I took the leap on a major career change, then lost two relatives within days of each other. I didn’t handle the stress well: I drank too much, and started smoking again. By December, my immune system was completely wiped. I spent much of the month fighting off various colds and viral infections while still getting up for work everyday to keep the money rolling in.

When 2019 rolled in, my asthma–which I’ve long tried to ignore whenever possible–was in a bad way. I spent a sleepless night gasping for breath against a terrifying flare-up, which was so bad I was almost hospitalized. The experience shook me, but it gave me a newfound appreciation for a device I’d long been ignoring: my rescue inhaler. Without it, I may not have survived that night. Yet for years, I’d been overlooking it.

How can a person come to overlook something so critical to their health that it regularly saves their life?

How can a person come to overlook something so critical to their health that it regularly saves their life? I don’t know, but after my latest attack, I realized I’d been almost foolishly blasé I’d been about my asthma for years, recklessly taking my  inhalers for granted and pretending I didn’t need regular medication to manage my symptoms, as if I hadn’t been severely asthmatic since the age of 7.

The absurdity of what I was doing hit me like a comically oversized ACME anvil when my doctor, upon following up my asthma flare-up with an emergency check-up, asked me an obvious question: Have you been using your daily inhaler to control your symptoms?

Of course, I hadn’t been. Worse, I’d been poking the great wheezing bear of my condition by exposing it to all my worst asthma triggers: stress, cigarettes, and exhaustion. There’s only so long you can play Russian roulette until you pull the trigger on a live bullet, but when it was finally my turn to take the bullet, my asthma inhaler took it for me.

There’s only so long you can play Russian roulette until you pull the trigger on a live bullet, but when it was finally my turn to take the bullet, my asthma inhaler took it for me.

It’s testament to what an amazing invention the emergency inhaler is, and how incredibly well it works, that most people consider asthma no big deal, when it is potentially lethal. In a way, maybe it works too well, lulling people like me into a false sense of security, even as we manage a condition that could easily end our life.

Or maybe not. As a kid, I remember wanting to pay as little attention to my asthma as possible, wheezing through whole days at school instead of risking embarrassment taking a puff in front of my fellow students. I suspect that some of that can be attributed directly to how pop culture regularly misrepresented asthma as being a disease of the feeble and the weird: a health condition suffered only by social outcasts who would probably die if they were to attempt even a single push-up. And asthma inhalers? A comedy prop, not a life-saving medical device, to be used  used exclusively by the hapless nerds of shows like Saved by the Bell and Boy Meets World.

Asthma doesn’t make me weak, it’s just something I have to manage.

It’s the stigma around health that most people suffering from chronic conditions experience  which encourages us to ignore our conditions whenever possible, until it is too late. In the case of asthma, I associated using my inhaler with being vulnerable, helpless, and pathetic, so I suffered rather than look weak. By ignoring my inhaler, even when I needed it, I pushed my identity as a person with asthma as far back as possible, refusing to acknowledge it until my symptoms became so bad, I could have died.

I’m now fighting like crazy to try to change my attitude towards my asthma. I’m trying to take better care of myself, not only in avoiding my asthma triggers, but taking my inhaler with me wherever I go. And whenever I feel shame about my condition, I try to remind myself that asthma doesn’t make me weak, it’s just something I have to manage.

And as I work to change my attitude towards asthma, I find myself looking more lovingly at the rescue inhaler I’ve so long wanted to distance myself from. For years, I subconsciously viewed it as a testament to my own weakness and vulnerability, but now, I’m starting to see it as something that gives me strength: a totem of power an item that makes me feel at ease wherever I am in the world, just knowing that it’s in my bag with me. It’s pushed me through breath-restricting thunderstorms, savage chest infections, lung crushing panic attacks, and the final laps of childhood athletic competitions.

An asthma inhaler is truly one of the best inventions of all time.

An asthma inhaler is truly one of the best inventions of all time. Being ashamed of it is as ridiculous as being ashamed that Superman had to save you from a burning building, because you couldn’t fight the fire yourself. So I’m done with shame. From now on, I’m going to be okay with having asthma, and celebrate my survival everyday, giving quiet thanks to the two inhalers that have continued to keep me breathing – even when I’ve forgotten to show them any love.

Chronic Illness Q&As

Traveling The World With An Invisible Disability

Once a globe-trotting television producer before a mega-virus struck her down, Emma Martins isn't letting her brain injury get in the way of living her best life.

When TV producer Emma Martins was sent on location to travel around the United States and Asia for the Discovery Channel pop science show How Do They Do It?, she couldn’t believe her luck.

Then, while on break in Vietnam, she contracted a viral infection that nearly killed her: acute disseminated encephalomyelitis (ADEM), a sudden inflammation of the brain and spinal cord that can lead to mobility problems, blindness, seizure, and comas.

After her illness, Emma had to relearn how to walk. ADEM had also damaged her optical nerves, leaving her partially-sighted. Realizing it would be impossible to return to her career, and newly aware of the issues afflicting the chronically ill, she became a befriender: a volunteer who gives support and companionship to people in need. She also writes about her progress on her blog.

Emma Martins filming on location in Trinidad before ADEM.

Yet despite living with a brain injury, Emma still travels the world, hoping that her example inspires others living with brain injuries to follow their passions, even if it requires adaptation. How do they do it, indeed? We spoke to Emma to learn more.

Are you able to recall much of your hospital experience?

I can’t remember much, but I do remember the MRI scans, getting blood taken out of my veins (which they could never find), and the parties and take-outs in my room. I had lots of friends and family around me, which really helped to get me through it all. I’ve only just realized that my mom relocated from another town for about six months to be with me.

It was quite a scary time. ADEM is apparently a ‘mega-virus’ which usually affects children but it’s more dangerous for adults. It caused a failure of my autoimmune system, which ended up attacking itself. It was touch and go, we didn’t know if I would win, or the virus. The only solution was taking a lot of steroids, and waiting.

How did ADEM affect you neurologically?  

I had to relearn everything.

My coordination, word recognition and eyesight were all affected. I had to relearn everything. Thankfully, I was always able to talk and express myself. I was transferred to a neurological hospital for rehabilitation and had to re-learn how to walk, cook, use money and even draw an exclamation point! I had to go back to square one with my yoga, swimming and running too.

After rehab, what sort of residual issues did ADEM leave you with?

When I was in hospital, I could hardly see at all. The fog has now lifted but I still can’t see on the right-hand side and I’m now registered as partially-sighted. My sight gets worse through anxiety – a very strange concept to me.

Beforehand, I don’t think I’d struggled with anxiety, but maybe my friends in TV would say otherwise. I now struggle with huge anxiety on a daily basis which I control using mindfulness techniques to calm my brain.

I can express myself very well, but it can be frustrating when people don’t realize I have a hidden disability.

I can express myself very well, but it can be frustrating when people don’t realize I have a hidden disability. I now have to be very outspoken about my fatigue levels, and when things are too much for me.

Being a TV producer is a very demanding role. Were you eventually able to transition back to work?

Emma Martins on location as a television producer in Campos de Agave, Mexico.l

Exactly a year after leaving rehab, my occupational therapist suggested volunteering to help me get back into the workplace. My first job as a volunteer was a befriender. I was then involved in outreach: visiting schools, job centers and charities to help to inspire people to volunteer, and won an award for exemplary contribution to voluntary services from the Mayor of London.

That year I also ran a half marathon, raising funds for a brain injury charity, and made my first film after my brain injury, educating people on what a brain injury is.

Since you’re unable to return to your previous role, you’ve adapted to using your media skills in new ways?

Yes, I’m volunteering for SweetTree, a home care service provider, training new support workers by giving them a real insight into what it’s like to live with a brain injury.

For the past year I’ve also been working on a podcast with celebrities who have experienced life-changing health situations. I feel like it’s helping me to stay in the industry and great to help my brain push forward into these new avenues. I’m hoping that by sharing my story and other people’s stories I can inspire others. I’m also hoping to start working on another film this year.

Did you resume traveling again? If so, what are the challenges?

Emma Martins in Valencia after recovering from ADEM.

I’ve always loved travel – for work and for pleasure – and this hasn’t changed. My first trip (during recovery) was to the South of France. Luckily,  my Auntie has a caravan there where I could relax, do yoga and chill-out in the sunshine. Going to the local markets with my heightened sense of noises and smells was good practice.

Next was the ‘land of Abba’, Sweden. I was still quite sick, however didn’t want to miss out on my friend’s bachelorette party. My memory is better now, but at the time I struggled to even remember the way back to the hotel, and anxiety levels were high. Things like using the hotel keys and getting the right room were skills I hadn’t yet relearned. A lot of it is linked to confidence, and at that time I couldn’t rely on my memory.

What other issues have you overcome while traveling?

Getting on and off boats in the Philippines with my balance and eyesight issues was pretty tricky. I loved it there, but uneven surfaces and getting around from the place we were staying at was hard. There was no accommodation in the Phillippines for people who are partially-sighted, so I just had to get on with it!

There was no accommodation in the Phillippines for people who are partially-sighted, so I just had to get on with it!

From that point on, I learned to ask for help – and most people tend to be very kind. I’ve also been to Australia for a month and to Spain to try to salvage my recollection of the Spanish language – which luckily hasn’t been lost.

What plans do you have for the future?

No one knows what’s around the next corner, so nowadays I’m living in the moment, and taking all these opportunities to improve. On one hand,  I’m lucky to still be here and to be able to travel to these fantastic places, but on the other hand, I’m very, very unlucky due to what’s happened to me. I’m getting better all the time, but there is still a long road ahead.

Chronic Illness Diabetes Roundups

6 Songs About Chronic Illness From Pop Stars With Health Conditions

Illness is the great leveler. Just ask Missy Elliott, Lady Gaga, Nick Jonas, Selena Gomez, Avril Lavigne, and TRACE, all of whom have written songs about the experience of being chronically ill.

When it comes to pop culture, the chronic illness experience isn’t always represented, but that might be about to change. Over the past few years, several high profile singer-songwriters and performers have revealed their own diagnoses with long-term conditions and disabilities, and they’ve begun to speak out on the topic, and even refer to it in their songs. Here, six musicians and the long-term conditions they live with.

Lyme Disease — “Head Above Water” by Avril Lavigne 

If you’ve ever wondered why Avril Lavigne took such a long break from the music industry, the answer is simple. The singer contracted Lyme disease which forced her to retreat from the spotlight, and question whether or not she’d ever sing again. Speaking to Billboard in October 2018, Lavigne explained, “I was in bed for f***ing two years. It went undiagnosed for so long that I was kind of f***ed.” She even shared that, prior to her diagnosis, multiple doctors had made her feel “crazy” by not believing her symptoms—which is something that many people, and women especially, can relate to.

2018’s comeback single—“Head Above Water”—is about the moment that Lavigne “accepted that I was dying… like I was underwater and drowning, and I was trying to come up to gasp for air” (via Billboard). Lyrics such as “My life is what I’m fighting for,” and “I’m underneath the undertow” will be instantly relatable to anyone who’s ever felt overwhelmed by a condition they didn’t ask for.

Fibromyalgia — “The Cure” by Lady Gaga

Back in September 2017, Lady Gaga was forced to cancel her European tour because of a fibromyalgia diagnosis. In a statement released at the time (via The Guardian), it was revealed that Gaga had made the difficult decision not to tour due to “severe physical pain that has impacted her ability to perform.” As anyone with fibromyalgia syndrome knows, the unpredictability of the condition means that patients can experience a variety of symptoms including extreme unexplained exhaustion, and severe muscle and body pain.

Released in April 2017, “The Cure” seemed to speak to the condition Lady Gaga had yet to reveal to her fans. Lyrics such as “If I can’t find the cure, I’ll fix you with my love,” and “If you say you’re okay, I’m gonna heal you anyway,” read like the comforting voice a chronically ill person might crave amid intense pain and discomfort out of their control. Gaga would return to the theme on the A Star Is Born soundtrack in 2018 with the track “Heal Me”.

Lupus — “Wolves” by Selena Gomez

Wild rumors suggested that Selena Gomez had absconded to rehab when, in fact, she was dealing with a lupus diagnosis she was yet to reveal to the world. Speaking to Billboard in October 2015, upon the release of her second solo album, the aptly-titled Revival, Gomez explained:” “I was diagnosed with lupus, and I’ve been through chemotherapy. That’s what my break was really about… I wanted so badly to say, ‘You guys have no idea.’”

In September 2017, Gomez revealed she’d also undergone a kidney transplant due to complications relating to the chronic illness. And she’s frank about the fact that living with a chronic illness has exacerbated her mental health. Speaking to Harper’s BAZAAR in February 2018, Gomez explained, “I’ve had a lot of issues with depression and anxiety… and it’s not something I feel I’ll ever overcome.”

Upon its release in November 2017, many fans speculated that Gomez’s collaboration with Marshmello—“Wolves”—was about lupus, and it’s easy to see why as Gomez sings, “I’ve been down the darkest alleys. Saw the dark side of the moon.”

Anxiety — “Anxiety” by TRACE

Up-and-coming singer TRACE isn’t afraid to delve into what living with anxiety is really like—conjuring it as the perpetual lurking demon it truly is. On her latest single she warns that the condition is, “Creeping through the doors, and under all my sheets. I can never sleep. It worries me.” (Which, same tbh). In the music video, the condition is literally personified, and TRACE is relentlessly stalked by two largely silent, horror movie characters.

Detailing her anxiety for L’Officiel, TRACE writes, “one minute you’re enjoying a snack in front of the TV, and the next you’re in the shower, bawling, thinking about death. Personally, Anxiety takes me away from the present and puts me in a harmful future. It makes me worry about things I cannot control or things I might not understand.”

Graves’ Disease — “I’m Better” by Missy Elliott

In 2008, Missy Elliott was diagnosed with Graves’ disease—an autoimmune disorder that affects a person’s thyroid—after exhibiting some pretty serious symptoms including a dramatic weight loss, per Billboard. The rapper explained, “It causes hair loss, your eyes bulge. My blood pressure was always up from just overworking,” having revealed her diagnosis in a statement to ABC News in 2011.

Speaking at Essence’s Black Women in Music event at the start of 2018, Elliott said of her condition, “I was sick and I couldn’t even lift a pen. My nervous system had broken all the way down.” But Elliott’s health has been improving and, as collaborator Lamb raps on 2017’s “I’m Better”, “It’s another day, another chance. I wake up, I wanna dance. So as long as I got my friends, I’m better, I’m better, I’m better.”

Diabetes — “A Little Bit Longer” by Nick Jonas

When he was 13 years old, Nick Jonas was diagnosed with type 1 diabetes, and went on to write the song “A Little Bit Longer” about finding out he had the condition. With lyrics like “Waiting on a cure, but none of them are sure,” Jonas grapples with the lifelong condition and his need to medicate and keep it under control.

In 2008, Diabetes Control explained that Jonas diagnosis followed a plethora of unexpected symptoms including “mood swings, extreme thirst, frequent bathroom breaks, and sudden weight loss.” And in 2015, Jonas told Healthline that he uses an insulin pump to monitor and control his condition, and said, “yes, it has affected me creatively in the sense of how it’s shaped who I am as a person, and given me perspective.”

If you’d like to listen to these songs on Spotify, here’s a playlist containing all of them. If you know other songs about chronic illness, feel free to add them!

Cancer Chronic Illness Q&As The Good Fight

How Music Heals

A new partnership between the National Institutes of Health and the John F. Kennedy Center for the Performing Arts explores the many ways music can heal the body and mind.

It has long been suspected that music can strengthen and improve the body and mind. But it is only in recent decades, with advancements in brain measuring technologies like fMRIs, that science has been able to prove how. One recently launched initiative, which straddles the border between the scientific and creative worlds, hopes to educate and inspire more research into the topic. Called Sound Health: Music and the Mind, it explores how listening to, performing or creating music involves brain circuitry that can be harnessed to improve health and well-being. It is a partnership between the National Institutes of Health (NIH), the largest public funder of biomedical research in the world, and the John F. Kennedy Center for the Perfoming Arts, a renowned creative arts institution in Washington D.C.

Heavily involved in the initiative is renowned soprano Renée Fleming, a 2013 National Medal of Arts winner and artistic advisor to the Kennedy Center (most recently, she sang at John McCain’s funeral). “The first goal is to move music therapy forward as a discipline,” she says of the initiative. “The second is to educate the public and enlighten people about the power of music to heal.”

In supporting the initiative, Fleming has been giving talks about it at her performances (nineteen thus far), often including local music therapists or researchers. She has also taken part in a brain imaging experiment focused on creativity and improvisation, where she spent hours inside an fMRI machine under the guidance of an NIH researcher. It was the exact kind of research which Sound Health encourages. In the machine, she was given three different instructions: to sing, to imagine singing, and to listen to music. “In my case the findings were a little bit surprising because the most powerful of the three in terms of brain activation was imagining singing,” she says.

We reached out to Fleming and NIH Director Dr. Francis Collins to hear more about this fascinating project.

What are some findings or impacts of the initiative thus far?

Francis Collins

Francis Collins: Over the last few years, I’ve been hearing some interesting reports about researchers using music to improve people’s health. But these were mostly anecdotes, and what was really needed for the field to grow and expand was scientific evidence. NIH, with its mission to improve health and ample funding, is in an ideal position to help build that evidence. And the fact that Renée Fleming and the Kennedy Center were interested in the intersection between music and health was a good indication to me that this topic could get people excited about scientific research and the future of medicine. So we joined forces to create this important partnership.

Music can help Parkinson’s patients walk with a steady gait, help stroke survivors recover the ability to speak, and give cancer patients relief from chronic pain.

Out first goal with the Sound Health partnership was to educate each other and the public on what we’ve learned from research in this area so far. We held an unprecedented scientific workshop at the NIH with some of the world’s leading music and health researchers. Some were investigating how music could help Parkinson’s patients walk with a steady gait, help stroke survivors recover the ability to speak, and give cancer patients relief from chronic pain. It was clear that there was some exciting research in this space.  We’ve since held two public events at the Kennedy Center to share this science with everyone. You can see recordings of the scientific workshop on the NIH website and read a summary here.  Recordings of some segments of this year’s Kennedy Center event are posted on YouTube.

Based on what we’ve learned, the NIH is supporting future research on this promising topic. We’ve announced the availability of $5 million in funding in fiscal year 2019 to support a wide range of research into the effects of music therapy on various health conditions. Because that research hasn’t been done yet, the most exciting results are yet to come.

How is music beneficial to young minds?

Renée Fleming.

Renée Fleming: Music activates more parts of the brain than any other activity, which is amazing. For education one of the things they’ve proven is that children benefit from learning a musical instrument; some of the reasons are obvious: the discipline, the practice. But the scientific piece is that eye-hand coordination through the ear helps them develop academically, with better aural comprehension and better academic outcomes overtime. It seems to be very powerful. It’s a fascinating project and there’s an endless number of things we can explore with it.

What do you hope the initiative will accomplish?

FC: I hope Sound Health will help determine whether and how music could be an effective part of a doctor’s toolkit. At the NIH, our goal is to better understand how our bodies work, then to use that understanding to help people live longer, healthier lives.  And we do that through research. We just issued these funding opportunity announcements about music and health to encourage scientists to submit their best research ideas.

I also hope that our partnership with the Kennedy Center and the National Endowment for the Arts will get people excited about this topic and the role science plays in it. So many people have made music a part of their daily lives, and they’re curious about why it has this profound effect on them. The public events at the Kennedy Center, which you can watch online, will help you learn more about yourself and share in our excitement about how music may play an important role in medicine.

What are some questions you’ve always had about music and its impacts?

RF: This potential of music to connect us with our emotional life. That’s valuable and not really well understood. Also the connection to music and memory. Our senses are hardwired to be used in terms of memory and music is one of the most powerful of these triggers.

As a health official, what interests you most about music and its impact on the mind and body?

FC: I’m fascinated by the ways that music overlaps with other processes in the brain. When you sing or play an instrument, it doesn’t just activate one part of your brain: a whole constellation of brain areas becomes active. And some of these musical areas are partially shared with activities like speaking, which if disrupted can have devastating consequences.  An amazing thing about this overlap is that when the normal speech pathway in the brain is damaged, music can sometimes be used as an alternate path.

When you sing or play an instrument, it doesn’t just activate one part of your brain: a whole constellation of brain areas becomes active.

This finding inspired something called “melodic intonation therapy.” When someone has a stroke that damages the left side of the brain, it can cut off the normal language pathway and make it hard for the person to speak. Therapists will work with stroke patients to sing phrases like “I am thirsty” to use that alternate, musical path instead of the damaged one. It takes a lot of work and practice, like using a different muscle, but stroke survivors have used this technique to learn to speak again.

Scientists have been working hard to understand the complex pathways in the human brain. And here is a payoff where we might use these pathways to improve mental health without drugs or brain stimulation. What’s more, music doesn’t just overlap with language: it also shares brain areas with movement, memory, motivation and reward. These things are hugely important to mental health, and researchers are trying to use this same concept of an alternate pathway to address new categories of mental disorders. If they’re successful, that would be a significant breakthrough for patients around the world.

Chronic Illness Disability Essays

In 2019, Choose To Be A Better Ally To The Chronically Ill & Disabled

Make this your New Year's Resolution. Here's how to stop being ableist in 2019.

Every time we open our mouths or put pen to paper, the words we use either affirm someone, or disenfranchise them; hurt them, or support them. Which is why, for New Year’s Eve, I’m imploring everyone I know to make the same resolution: try to be mindful of your own ableist tendencies, and start trying to change them.

As an invisibly disabled person, I experience ableism, or discrimination in the favor of able-bodied people,  on a daily basis. Most of the time, the people that perpetuate these issues are not bad people; in fact, many of them consider themselves allies. But because ableism is so deeply engrained in our culture, even people who want badly to help sometimes end up hurting or alienating people like me.

Think about it. How many times in your life have you said that someone was acting crazy, or needed to go back on their meds? How many times have you excused some momentary instance of clumsiness by saying: “Sorry to be such a spaz?”

All of these are examples of ableist language. Of course, most people don’t mean to insult people with mental or neuro-motor issues with these turns of phrase. But the intention doesn’t change the fact that there are real people out there–people you probably care about–who do struggle with such issues, secretly or not. People with health conditions and disabilities already have a harder time in life than most able-bodied people. Do you really want to make life even an iota harder for them… or, heck, for anyone?

If you’re a good person, you don’t. So here are some examples of the way ableism can sneak into our everyday interactions, and some tips on how to fight against it.

Language

Words reflect culture. This means that what we say is a microcosm of our society’s views of people, places, and things. There are many everyday idioms that are actually deeply rooted in ableism. Most of us now know that it isn’t cool to make fun of or belittle someone who is disabled mentally and/or physically, but our language hasn’t completely caught up.

We often fail to recognize the power that labels can hold, both positively and negatively, and when we use labels to describe others, that has a direct and sometimes very traumatic impact on their lived experience.  If we use ableist language, we limit the existence of another person and reduce them to something they are not. All of us, able-bodied and not, are multifaceted, and our language needs to reflect that.

All of us, able-bodied and not, are multifaceted, and our language needs to reflect that.

So where do you start? Well, there’s likely going to be some trial-and-error, but the good news is, no one expects you to get it right immediately, and most disabled people or people with health conditions will appreciate being asked questions about what words and terms to avoid.

The key skill you need to exercise is empathy. Ask yourself questions like: If you were someone who used a wheelchair, would it feel good to you if someone said you were “bound” to a tool that helps you navigate the world? If you were a person with a mental illness, would it feel good to you for someone to describe something as crazy or psycho? If you were someone with epilepsy, would you be okay with being reduced to that condition as an “epileptic?”

Taking a moment to consider disability in its human context makes it much easier to understand why ableist micro-agressions can be so painful, even when they are unintentional. All of us, no matter who we are, want to be seen for who we are, and using precise, compassionate language is key to meeting that goal.

Actions

Supporting people with disabilities and breaking down ableism isn’t just about what we say, it is also about what we do and think. And, if anything, this can be harder to address than what language we use, because it’s often not as convenient to act like a proactive ally to people with health conditions. But the old adage really is true: actions speaks louder than words. So if you really want to support people with health conditions and disabilities in your daily life, here are some examples of things you can be doing.

Don’t assume that everyone in the room is able-bodied — Disability can look all kinds of ways, and it doesn’t always appear the way that we have been taught to traditionally see it.  The disability community includes people with chronic illnesses (both mental and physical) and a whole range of impairments that you are unable to see with the naked eye. When I sit in disabled seating on the subway, I often find myself thinking that other passengers must be wondering why a healthy-looking 22 year old is sitting in the areas reserved for people with disabilities. Most people with invisible disabilities struggle with feeling validated in the community. So please do what you can to support us.
Support disability-accessible businesses, and make plans with accessibility in mind — The accessibility of a shop, venue, or restaurant literally determines who can come. That means that if you want to be less ableist, you should make a business’s accessibility in mind when choosing to give them your money, even if their lack of accessibility doesn’t otherwise effect you. And keep in mind, accessibility doesn’t just mean that there are wheelchair accessible entrances, although that is important. For example, if you were planning an event, it also means smaller, more subtle things like making sure that there is space for people to sit, that there are microphones to assist hearing-impaired people in attendance, and that there are plenty of breaks schedule for people who deal with fatigue or chronic pain. It is impossible to imagine every possible disability and plan for them, of course, but choosing to be mindful in even a few small ways of the way inaccessible businesses can shut disabled people out of an experience can reap big dividends.
If you’re a manager, allow employees flexibility in where and how they work — More than 133 million Americans--over 40 percent–deal with chronic conditions. An additional 40 million are considerd diabled. That means, if you’re a manager, there’s a good chance someone who works for you is dealing with medical issues. Be their ally. For those people, it can be a lifesaver to be able to work from home sometimes in order to get to doctors’ appointments or just to give their bodies time to rest. Employees should have the flexibility to work how and when they can, as long as that doesn’t impact their work.  Not only does working from home benefit the employee, but it also benefits the employer; employees that work from home have been shown to be more productive and more likely to stay with the company. Plus, telecommuting is more ecofriendly and more cost-effective.
Don’t reduce disabled people into stereotypes —  So many of the stories that we see about disabled people only focus on the sad parts or the inspirational parts of the disabled experience. Either people are held up as miserable people to feel sorry for (referred to in the chronic illness community as “tragedy porn”), or they are romanticized as saintly individuals struggling valiantly to go on (known similarly as “inspiration porn”). What our culture rarely views disability as is just another factor in the human experience, or disabled people as multifaceted human beings, just as hard to distill into a single quality as anyone else. What we need are representative narratives of disability, and the only way we’ll get those is by demanding them. So when you are selecting movies and books to watch, try to seek out narratives of disability that are multidimensional (this catolog complied by Vanderbilt’s Iris Center is a good place to start). And when possible, eek narratives created by disabled people; searching hashtags like #disabledartist or #disabledcreatives can help you find artists to follow (and support their work financially if you can)

Ableism isn’t going to disappear overnight, but if all of us commit to taking small actions to fully include people with disabilities—millions of Americans like me, who are your neighbor your coworkers and even your family members—we can begin to create more equity in this country.

Chronic Illness Essays

The Man In The Makeup Aisle

It's hard being a young man with alopecia. Especially when you're trying to learn how to draw your eyebrows on.

People sometimes ask if I have cancer because I don’t have any hair, not even eyebrows.


Luckily, I don’t. Cancer is a life-threatening disease that everyone understands. Not alopecia universalis. It is merely a dull, chronic condition whose negative side effects are largely psychological.

For a long time, having alopecia made me feel different from “normal people,” and more vulnerable to their attacks and stings.

So I began drawing on eyebrows and eyelashes to look at least a little more normal.

My First Visit To The Cosmetics Section

Daniel Ulloa was born with alopecia universalis.

I started this just after graduating college at the age of 22. Every so often I would see that quizzical look or get asked a question I didn’t want to answer, like “are you in chemo?” I was sick of being perceived of as “weird looking,” and I personally hated hated how I looked without eyebrows or eyelashes.

I thought I looked unnatural without hair. So I headed to the makeup aisle to find me some.

It was stressful. There are just so many options in the women’s cosmetic section! The brand names meant nothing to me; the vague promises of their catchlines was just word salad to me. I got a bad case of decision fatigue just walking down the first aisle. I walked away the first time in defeat.

I thought I looked unnatural without hair. So I headed to the make-up aisle to find me some.

Finding guidance on what products to buy was difficult. I was embarrassed to ask people for help, thinking they would judge me a weirdo. I had no one to talk to, who also had alopecia and had tried the same thing.

Eventually, I ended up making my first stabs at an eyebrow after following some instruction videos online. That helped me with technique, but finding the right shade of makeup was difficult.When I tried a very dark shade, a couple of friends said it looked weird, especially with my light complexion.

Finally, I met a woman who recommended a shade that went well with my skin tone. I used it consistently for years.

Practice Makes Perfect

But even then, the process remained challenging. Sometimes, I would accidentally draw my eyebrows on too thick, like those of a cartoon character. There are some pictures from those days which look so ridiculous, I’ve scoured them from social media.

While I got better over time, I never got a great technique down. Sometimes, my eyebrows would look normal, while other times, I’d inadvertently draw them on crooked, making me look wonky. Eyelashes, though, were easier: for them, I’d just circle my inner eyelids with a pencil.

For years, this morning routine of putting on my eyebrows was incredibly stressful. The more I worried about how I would be perceived if my eyebrows didn’t look natural, the more likely I was to screw them up. When you’re trying to be on time in the morning, this is not what you want to be worrying about.

The more I worried about how I would be perceived if my eyebrows didn’t look natural, the more likely I was to screw them up.

Even in the best-case scenario, though, there were a lot of things that could go wrong to destroy my meticulously-arranged look. In the summer, when it was hot, my eyebrows would run: I’ll never forget the feeling of embarrassment I once felt when I looked in a mirror after a day out walking with friends and saw I’d completely wiped my eyebrows off.

But even when my makeup was applied perfectly, some people still didn’t like them. My parents were among them: they said I looked better and more natural without the makeup.

Daniel Ulloa with his eyebrows penciled on.

Ditching The Eyebrow Pencil

Eventually, I had my eyebrows tattooed on, in a process known as microblading. It wasn’t very painful and they look sufficiently real. I still outline my eyelids for the effect of lashes.

Your self-image can’t be defined by what other people think.

Once in a while, a few people say something but I shrug it off. I’ve gotten better at that, but it took a long time to learn.

Because if there’s one thing that years of drawing on my eyebrows every morning taught me, it’s that your self-image can’t be defined by what other people think. When it comes to self-esteem, the most meaningful things you do, you do for yourself.

Chronic Illness Features Mental Health Roundups

The Best Podcasts For People With Health Conditions

Five podcasts that will make you laugh and feel less isolated as you deal with a chronic health condition or disability.

You can already tell: it’s going to be one of those days. Your symptoms are spiking, it’s impossible to focus on anything and you’ll be lucky if you make it out of bed. On days like these, sometimes it just helps to feel understood. Other times, a motivating kick in the pants is what’s required. That’s where podcasts come in.

Isolation can be a major side effect of chronic illness, but fortunately, podcasts are trying to change that. Just ask Michael James, an avid podcast listener who has lived with a balance disorder for over 19 years,.

“Probably the best thing about the Internet has been that it connects people who may have previously felt completely isolated and alone, and this is especially true for people with health challenges,” he says. “At their best, health-related podcasts remind me that I’m not alone; relax or shift my mood and/or perspective; and clear new paths for thinking about my health challenges.”

Here are some of our favorite podcasts for people managing chronic health conditions.

Made Visible

Made Visible podcast logo.

Made Visible

What it is: According to founder Harper Spero, “Made Visible is a podcast that gives a voice to people with invisible illnesses. The podcast aims to change the conversation around invisible illnesses, helping those who experience them —whether as patients, caregivers, or friends or family members — feel more seen and heard.”

What to expect: A 40-ish minute interview with an individual about their invisible illness, how they cope and what they’ve been able to achieve despite their setbacks. Recent topics included Job’s syndrome, depression, addiction and narcolepsy. Listener Jennifer Rapp comments, “The openness of Harper and her guests gives me insight into the experiences of those who are managing illnesses in their lives. I feel a great sense of gratitude for the generosity of the guests sharing their stories.”

Good for: Hearing about other people’s journeys with chronic conditions.

Listen and subscribe to the Made Visible podcast here. 

The One You Feed

The One You Feed podcast logo.

The One You Feed

What is is: This podcast is based on a parable about two wolves and how the one you “feed” is the one that survives.

What to expect: Host Eric Zimmer begins each episode by asking the guest for his or her interpretation of the parable. Then the interview continues, focusing on how other people keep themselves moving in the right direction. Topics center on mind-body connection, wisdom, motivation, and philosophy.

Good for: While not specifically a podcast about health conditions, this is a fantastic one to tune in to when you need to work on your mindfulness.

Listen and subscribe to The One You Feed podcast here.

Sickboy

Mr. Sickboy podcast logo.

Sickboy

What it is: Three friends get together in this podcast to break down the stigma associated with illness and disease.

What to expect: Irreverent, funny and graphic, this podcast makes you feel like you’re instant friends with the hosts and their guests. A warning, though: it can be medically graphic and cringe-inducing. This is one of our favorites: “I appreciate how dark humor can help shift my perspective on what is a pretty unfunny situation (chronic illness),” says Michael James.

Good for: when you need to laugh about the situations that occur from chronic illness.

Listen and subscribe to the Sickboy podcast here.

Invisible Not Broken

Invisible Not Broken podcast

Invisible Not Broken

What it is: Host Monica Michelle describes Invisible Not Broken as “a podcast that interviews people with chronic and often invisible illness along with panel episodes about issues that affect us with disabilities.”

What to expect: A casual, hour-long conversation covering a range of topics—from sexuality to travel to holiday survival—all within the parameters of invisible illness. Episodes are often filled with practical tips and advice, like good gift recommendations for “spoonies,” (people with chronic illness) and how to travel.

Good for: when you feel like sitting with friends and chatting.

Listen and subscribe to the Invisible Not Broken podcast here.

Mental Illness Happy Hour

Mental Illness Happy Hour podcast logo

Mental Illness Happy Hour

What it is: Whether you suffer from mental illness on its own or as a side condition to another chronic ailment, Mental Illness Happy Hour was designed to make you not feel so alone. Comedian Paul Gilmartin aims to break down the stigma associated with anxiety, depression, phobias and more and brings the listener into a welcoming cocoon of solidarity.

What to expect: Each episode lasts at least an hour, and contains an interview with a guest who discusses his or her own particular struggles. Paul then reads listener mail and discusses issues such as shame, keeping secrets, and struggling with depression.

Good for: when you need to feel like there are other people out there who struggle.

Listen and subscribe to the Mental Illness Happy Hour podcast here.