ADS

@adsilva | contributor
ADS is The Mighty's rare disease contributor. Her passion for advocacy and helping others make real, meaningful connections is what fuels her work.
Matt Rivera

Addressing Mental Health in BIPOC Communities

Picture this: You’re knee-deep in a global pandemic and on the brink of daily mental collapse. You were working as a freelance publicist and lost all of your clients, you are month-by-month falling thousands of dollars behind on rent and calling the unemployment office on an almost daily basis fighting against the millions of other people trying to get even one ring on an impossibly unreachable phone line. You are watching friendships implode and fade away, as you are backed into a corner of loneliness that feels like a sociopathic cosmic test of patience and a simultaneous awakening of who those “friends” really are. You are watching a sickeningly incompetent president sink the country further and further into an abyss while watching the systematic murder and violence manifest on social media and on television against the lives and rights of Black, trans and people of color unfold minute by minute, all the while you are dealing with black toxic mold in your apartment and a property management group who have left you in the dark to breathe in mold spores on your own causing unbearable respiratory symptoms. This eventually led you to take bi-weekly COVID-19 tests to appease your anxiety and paranoia that you have inevitably lost the battle and finally contracted COVID-19, joining a legion of thousands of others, despite doing everything the “right” way. All of a sudden, you receive a message asking if you would be interested in leading discussions on mental health — on video – which means showing the face you’ve been intentionally hiding for months and using the voice that’s been silenced by solitude, while simultaneously being tasked with writing a follow-up article on the subject. (Insert imposter syndrome here.) The topic in question for said article: “How to Break Down the Walls of Pride and Rigid Cultural Attitudes to Have Honest Mental Health Discussion with Your Family.” Which I then had to ask myself…how do you break down the walls of pride and rigid cultural attitudes to have honest mental health discussion with your family? As the dust settled from my months-long seemingly unending anxiety attack, and my head started to wrap around the topic that I suggested, I began to realize that I had never done the exact thing I had been charged with writing about. And this was for my very first published piece, no less. I have always had a complicated relationship with my family. Counterintuitive to most Filipino-American families, my Filipino-American family had the exquisite luck of not subscribing to the traditional Filipino values of family first and togetherness above all else. In fact, I don’t really know much of anything about my family. I recall asking a cousin of mine who lives in Seattle, “Has our family always been like this? Have we always been this…separate from each other?” She told me a story about my aunt who recently passed, saying that her husband would always try to unite the family back then, including my father and their three other brothers. After my uncle-in-law passed, she said we all went back to our separate ways. In some ways, I blame my own lack of initiative to find out more about my family. Why didn’t I ask them myself? I knew bits and pieces of my dad’s past, but in my teenage rebellion, I was more interested in sneaking out with my friends to punk shows and solemnly swearing that I was up to no good. My mother left me to move to Texas with her newly formed family when I was around the age of 8, in what would have become an unforgettable Christmas memory in which she came to drop off my present and ended with the cops showing up and me as a child having to choose who I would spend the rest of my youth with. The odds landed on my father and it would be 12 years until I saw her again at the age of 20 after my father passed away from esophageal cancer. Little did I know those events, among many, would create the trauma I deal with in my adulthood today. Feelings of abandonment, trust issues, my relationship with mortality, severe anxiety and depression, an extreme aversion to being controlled by any type of authority or being told what to do…the list goes on, with most of those issues being swept under the rug until I confronted them head on later in life. With my last connection to my roots being my mother, we find ourselves currently at odds with each other with communication and closeness. Along with my half siblings, we concluded we don’t know much about her either, as she has never disclosed much about her past. She has mostly checked out emotionally, and has seemingly settled in the life she created with her husband (a less-than-ideal partner), which includes her own undiagnosed mental health issues and unwillingness to open up as a loving mother. So with all of that being said, how do I, of all people, give others advice about connecting with their family? I realized I had to look outside of myself for answers. I reached out to friends, family and colleagues to learn about their stories and experiences on how they did or didn’t have those discussions themselves. As I honed in on Black, Indigenous and people of color (BIPOC) stories, I had a few non-BIPOC friends share their stories as well, and had to acknowledge that the uncomfortableness and difficulty associated with mental health discussions amongst family were universal and crossed all cultural boundaries. But for the sake of my experience and to uplift the voices of my BIPOC peers, I found a uniting thread in how mental health is approached in families of color and the pervading issues we face as children of immigrants. I spoke to a high school friend from Hawaii, and another friend from Texas whom I met through one of my half sisters. Both have vastly different experiences with mental health, but two distinct similarities in that seeking mental health services was somewhat normalized for them, but that same mental help was shunned by their parents and family for themselves. My Filipino-American high school friend mentioned that her mom supports her being in therapy 100 percent, but refuses to go to therapy herself to deal with some of the emotional issues that she hasn’t processed. My Mexican-American friend mentioned that for her Hispanic relatives, mental illness wasn’t looked at seriously or discussed outwardly because it was seen as ‘embarrassing’ to acknowledge, even though members of her family clearly were struggling with their own internal issues. It wasn’t until one of the other members of her family said it out loud, that the rest of the family came around and supported their decisions to seek help. So it seems that pride and presenting a certain image to others can play a huge part in BIPOC understanding of mental illness. Problems can be acknowledged, but typically until an elder member of the family breaks the mold and speaks out, the topic will be kiboshed before the rest of the family will begin to listen. Speaking of family, I am one out of eight other siblings, one biological, and the other seven are half siblings. I am technically the middle child out of all of them. I grew up with different sets of them throughout my life, and never really got close to some of them until we all became adults. So, in many ways, I missed out a lot on their growing up and I was very curious to hear what some of them had to say about their experiences in mental health within our family. For me, growing up Filipino is such an interesting thing, because we tend to have so many “isms” for better or for worse. One of my siblings brought up some really good points about body image (some Filipino relatives love to mark the passage of time since they last saw you by mentioning how ‘fat’ you’ve gotten), religion (don’t get me started), and sometimes even being gaslit by your own family due to their own experiences from a different time within our culture. For me, growing up Filipino means having your own issues downplayed because your parents had to struggle so much more (allegedly — I feel like we can also be drama queens). I can remember on more than one occasion where letters of bills were used as a tool of guilt to make me more grateful for what has been bestowed upon me. What right do we as children have to complain, when we were born as Americans? Countless times I’ve heard how things in the Philippines were that much harder for them, which I don’t argue, but how does that help us, as American-born kids, process our own issues? The expectation becomes so much higher to live up to their own unfinished American dreams, and the denial of our own mental health problems quickly becomes a ticking time bomb…which has gone off a few times in my 20s. I also reached out to some other demographics to get their take on this topic. Taiwanese-American comedian Eddie Hill mentioned, “ Mental health is often seen but not heard in Taiwanese communities. ” He continued, “ no matter how severe, emotional or psychological concerns are always indirectly acknowledged but never addressed.” Publicist Macy Harrell shared about her sister who deals with chronic depression, anxiety and obsessive compulsive disorder, saying that as a Black family, it was very challenging for her parents to process and deal with these issues the “right” way as mental health is not traditionally prioritized in their culture. So what’s the takeaway? After all these conversations across cultures, is the outcome a dead end? Are we as BIPOC doomed to struggle through unspoken truths and the stigmas of our respective ethnic families and their ingrained attitudes towards mental health? Well, for me, the short answer might be yes. There are some inherent things that won’t change because the bonds of our blood run deep into our ancestral past, and there are some things you have to accept growing up in an immigrant family. Some of us might not have the warm apple pie hugs and kisses when we scrape our knees. Some of us might not have the average “American” pass-the-potatoes round table discussion about what’s on our minds and how we feel. It is our unique experience that some of us have to go through this lack of openness, and more often than not, the complete absence of Full House style tender moments where the audience goes, “ awww ” when Bob Saget shares a soft parental bonding moment with DJ. But that’s not our sob story, and that’s not to say we can’t ever have those moments within our families. We can have those conversations and learning experiences with our parents and family members if we try. I can’t promise that it will happen as easily as saying it out loud, and speaking your truth to them. Or if it will happen at all. But the operative word is “try.” All we can do is try and hopefully someone will listen and understand us when we say we’re struggling, and that they will see beyond their cultural bias. We can have our Joy Luck Club moment, in that it might be painful, and it might be sad, and it might be the hardest conversation we will ever have with our family. But hopefully, once the tears have been shed, and the battle lines have been withdrawn, we can begin to heal. And that usually happens with food. A bowl of chicken adobo. Freshly steamed bao. The most unnecessarily large bowl of noodles or curry. Once the food starts being served, you can know it’s being served with love, as it’s usually one of the only ways our family knows how to express it. And that in itself is acceptance and understanding, and a small step for the better.

Community Voices

What topic will be most helpful to discuss?

<p>What topic will be most helpful to discuss?</p>
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Community Voices

Too much

I really don’t think I want to be here anymore. I can’t walk, I can hardly use my arms, I am in constant pain and pain meds make me sick, I have a new rare lung disease and they tell me they don’t know how long I’ll live anyway. My partner is injured and can’t help me like I need and we don’t have any money for me to have an aid or someone help me. I’m so stressed out about politics and the threats of taking our Social Security and Medicare away. I’m so afraid that I just don’t want to live anymore.
#RareDisease #SuicideIdeation

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Community Voices

What Are Your Favorite BIPOC-Led Movies?

<p>What Are Your Favorite BIPOC-Led Movies?</p>
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Community Voices

Who Are Your Dacorite BIPOC musical artists?

<p>Who Are Your Dacorite BIPOC musical artists?</p>
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Community Voices

Who Are Your Dacorite BIPOC musical artists?

<p>Who Are Your Dacorite BIPOC musical artists?</p>
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ADS
ADS @adsilva
contributor

How Telehealth Is Improving Healthcare for Rare Diseases

The COVID-19 pandemic brought to surface many health-related disparities for underserved populations, including patients and families living with a rare disease. Earlier this year, the National Organization for Rare Disorders (NORD) published a COVID-19 Community Survey Report, detailing the multiple struggles for families and patients: almost 30 percent of respondents lost their jobs due to COVID-19, and close to 20 percent of the respondents were unable to access medications due to shortages or access issues with insurance. It is an understatement to say that COVID-19 increased the already stressful lives of those impacted by rare disease. However, the community is well-known for its resiliency, and many have also experienced some ease in managing their care, including accessing health-related appointments through telehealth. To understand more about the overall transition to telehealth, The Mighty teamed up with NORD,  a non-profit organization supporting individuals and families facing rare conditions through education, patient advocacy and research, and asked our communities, “What’s one unexpected way telehealth has improved your care or your child’s care during COVID-19?” Here’s what they had to say: “Some days, I am in too much pain to get out of bed, and any physical effort is exhausting. For regular follow-ups, telehealth is great, because I can talk to my doctor from home, and I don’t have to keep cancelling appointments when I’m physically unable to get there. I’m also in an at-risk group, so using telehealth also means I’m not exposed unnecessarily to COVID-19.” – Brandi B. “Before COVID-19, I wasn’t able to see my therapist. Now I get to do telehealth visits with her regularly and improve my mental health.” – Danielle P. “Many of my child’s specialists are at a children’s hospital three hours away from home. At a minimum, we have to travel there every two to three months for two nights to see multiple doctors and get quarterly prescriptions. COVID-19 made travel and overnight stays impossible. The doctors were able to handle visits via telehealth, and finally used electronic prescribing to send his highly controlled medications to our local pharmacy. This will be allowed long-term, even after COVID-19. We will only have to travel to the children’s hospital for in-person visits one to two times a year — unless something changes– while keeping up with our much more frequent telehealth visits. This is a major change for us. My son doesn’t handle the travel well, nor the sleeping in hotels. And it’s cheaper for medical insurance too, since they have to pay for the travel expenses and hotel and meals.” – Lila G. “It has been wonderful. I have myasthenia gravis, and some days just trying to feed myself and my husband, who had his foot reconstructed and is non-weight bearing, is a challenge. So, being able to see and speak to one of my doctors or my husband’s doctors is a life-saver for me. Now, I don’t have to drag myself out in the high heat and humidity, drive to my doctor’s office, sit in the waiting room while wearing a mask, then sit in another room just so my doctor can renew my blood pressure medication. Video appointments save my energy, not that I have much of it.” – Chrissy T. “On days I don’t feel well, I don’t have to reschedule because I can do the appointment in my pajamas on my bed.” – Kimberly B. “I no longer having to travel three hours to see a specialist.” – Chloe E. “I have found it easier to access care. I didn’t have to worry about the process of leaving the house for an appointment unless I’m extremely unwell.” – Jessi H. “My doctor has been much kinder and calmer over the phone. He’s not ranting about his job or threatening to take away my pain medication, so my stress level has gone down.” – Elsie G. “I felt that I had more time to ask questions, and I was more comfortable doing so because I wasn’t as anxious without the doctor watching me. It also has made my appointments more accessible; instead of spending more than two hours driving each way to get to my appointment, I can do it from my own home within risking exposure to COVID-19 or any other illnesses.” – Kathryne Z. “I have mitochondrial disease and many other rare diseases, and I’m able to avoid many germs, including COVID-19, because I don’t have to visit multiple hospitals.” – Kristina K. “Before COVID19, I wasn’t able to see my therapist. Now I get to do telehealth visits with her regularly and improve my mental health.” – Danielle P. “I still have to go into my doctor’s office to get injections, but it’s been much easier to get the care I need with telehealth. I don’t drive right now and I go to therapy an hour away. Now I get to see my therapist regularly without worrying about how I’m going to get down there. When it’s safe for me to go back to work, I’ll be able to get therapy from my classroom (I’m a teacher) without leaving school early. It forced me to use it when I didn’t realize it was so available for me. It makes my life easier!” – Liz T. What’s one unexpected way telehealth has improved your care during COVID-19? Let us know in the comments below.

Kadeem Morgan

Growing Up as a Black Man With Cystic Fibrosis and Feeling Isolated

I am a 23-year-old male living with a rare disease called cystic fibrosis (CF). To make things even more interesting, I am a 23-year-old Black male living with cystic fibrosis who had received a double lung transplant during the spring of 2017.My CF journey is not too far off from other stories you hear. I was diagnosed a year after birth, as doctors could not figure out what was making me so symptomatic. At first, they didn’t come to the conclusion that I may have CF because in their view, it was “uncommon” for people of color to inherit such a genetic disease. After a year of seeing a multitude of doctors, practitioners, and other specialists, I was finally referred to a major children’s hospital called Sick Kids Hospital in Toronto, Ontario. There, they did a sweat test on me, and finally diagnosed me with cystic fibrosis. Currently, the testing for CF relies on genetic variants collected primarily from the white population; little is known yet about the variants that cause CF in non-white populations. After doing a family background analysis, it was discovered that I do have white European ancestors on both sides of my family, which is why I was able to get a correct diagnosis.As a child, I experienced various ups and downs growing up. Other than my younger brother, I didn’t know anyone else who had CF, nor did many people at the time know what CF really was.Without anyone to possibly relate to, I felt isolated.For a long time, I didn’t know how to deal with this fact. What made things even worse for me was that all my peers, classmates, and friends were all relatively healthy–none of them were chronically ill. Knowing this, as a child, I tried to live as close to their reality as possible, even if it proved damaging to my health in the long-term. I wanted to be “normal” like everyone else around me. I wanted to be a healthy kid who didn’t have to worry about taking medications every 12 hours or completing a nearly two-hour nebulizer regiment twice a day. This would be a part of my daily life for nearly 20 years until I eventually received a double lung transplant in 2017. Most of my life I had always felt like an outcast, not knowing anyone who shared the same experiences as me. Even as I got older, and became more educated and connected within the Canadian CF community, I still could never find someone I could fully relate to – someone who looked like me.Everyone I had met who had CF (virtually), were predominantly white patients of European descent. I have met only one person of color who has CF that is also my age; her background is Guatemalan. I love her to death, and glad she is a part of my life, but the fact still remained: she looked nothing like me. In hindsight, feeling like I was the only one of my kind made me a lot more resilient living with CF.As I grew older and more aware of the realities that surround cystic fibrosis, I became more dismissive of my realities and a future living with CF. I knew I was considered a “needle in the haystack,” so I thought that maybe the most common outcomes with CF wouldn’t happen to me because I wasn’t like the “typical” individual living with CF.It turns out, I was worse off than your standard CF patient.I believed that my skin color gifted me a certain amount of immortality against this “white man’s” disease, as the world had led me to believe. I had heard of people with CF whose lung function hovered in the 20 percent range (based off of pulmonary function tests), who were close to being immobile. In my late teens, when my lung function percentage was in the 20s, I was still able to go to school and work a part-time job with some obvious difficulties, but there was nothing CF held me back from doing. It may have taken a bit more energy, or taken me a little longer than average. But I still lived and continued to live as best I can, until I couldn’t. My blackness made me feel like Superman’s kryptonite, and it was this thinking that led to my insufficient ability to care for myself at different points in my life.Now that I am older, in hindsight, I believe that if I was exposed to other individuals who fought the same fight as me at such a young age, maybe I would have been a lot less resilient towards taking care of myself adequately and sufficiently. Maybe if I was exposed to such, I wouldn’t have needed a double lung transplant in 2017 and I wouldn’t be here thinking of ways to express my earlier years of life living with cystic fibrosis. Maybe if… things would have turned out unbelievably different.However, I am a product of my surroundings and upbringing, and I am not ashamed to admit it.To anyone in the rare disease community who feels like an outcast because you “look” different from the other patients in your community, you’re not alone. Your journey matters. Find solace in being the needle in a haystack, and realize you can be the catalyst for change in someone’s life.Love the life you live. Live the life you love.

Community Voices

This is nurse Kerry, updating for Rick. His surgery went well. The tumour was bigger than anticipated but the surgeon is confident he got it all.

Ricks eyes are swelling, as was expected and by tomorrow there is a high chance they will be swollen shut so he has as asked me to advise he won’t be posting for awhile, obviously.

He is grateful for your prayers and best wishes.

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Amanda Lynch

George Floyd Protests and the Effects of Continued Racial Trauma

Philando Castille. Sandra Bland. Yvette Smith. Malissa Williams. Timothy Russell. Tamir Rice. Akai Gurley. Jonathan Ferrell. Michael Brown. Eric Garner. John Crawford. Rakia Boyd. George Floyd. Terrance Crutcher. Samuel DuBose. Freddie Gray. Walter L. Scott. Breonna Taylor. Say their names. They were each killed by the police. Last year, police officers killed over 1,000 people. According to the Washington Post, of that number, 23% of those murdered were black, despite being 13% of the population. In fact, according to research, there were only 27 days in 2019 where police did not kill someone. Black people are three times more likely to be killed by police than white people. They are also 1.3 times more likely to be unarmed. In 99% of these cases, officers have not been charged with a crime, even when there is video evidence. (See more at Mapping Police Violence.) In communities where police departments have put limits and tighter restrictions on “use of force” and increased mental health training, the number of officer shootings have declined. Videos of these shootings tend to spread like wildfire. Calls for police reform and community policing ring loudly, die down and then cycle back through the news months or weeks later when another shooting captures the nation’s attention. These statistics are not only troubling, they are triggering. They can also be debilitating for African Americans living with mental illness. This data coupled with the increased media attention, debates on social media and the release of the videos showing police violence can be detrimental to one’s mental health. Every time this happens, the racial trauma is real. It is also systemic and systematic. We simply can not ignore it. As a black woman living with anxiety, I’ve found that I have to step away from the constant replay of these images on social media for my own self-care. In a previous article, “We Can’t Undermine the Effects of Racial Trauma“), I offer the following: If you find that you are experiencing the following symptoms due to the increasing accessibility to these images: intrusive thoughts, flashbacks, difficulty concentrating, irritability and jumpiness, then you may be experiencing post-traumatic stress disorder (PTSD). I would encourage you to seek help from a mental health professional, find support within your community with civic associations and groups who promote social justice and volunteer to bridge the gap that may exist between your community and area officers. Further, if you find you are struggling to maintain your self-care during this time, find ways to build in breaks by unplugging from social media and the news, set healthy boundaries and reach out for support when needed. It is very easy to be triggered by the constant barrage of racial trauma we are faced with both online and in our day-to-day lives. Black folks in our community: how are you taking care of yourself right now? Let us know in the comments below.