stigma

Informed and Included: An Interview with NOWINCLUDED’s Tiffany Whitlow

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Today’s post is an interview with Tiffany Whitlow, who is the co-founder of biotechnology research company Acclinate, and its associated community brand NOWINCLUDED – the online health community focused on empowering the Black community to make better-informed health decisions. In this interview, we talked about NOWINCLUDED, shrinking the stigma, and the importance of taking charge of your mental health. Thank you for talking with me, Tiffany!

While all communities experience mental health issues, the Black community suffers from an increased rate of mental health concerns. What is NOWINCLUDED doing to change this?

NOWINCLUDED is a community created by Black people for Black people to talk and learn about health issues that impact us, including mental health. Through NOWINCLUDED, our community members can have a safe space for them to discuss what’s going on with them, get support from people who can relate to them, and learn about opportunities and information that can help them be healthier. We’re also partnering with organizations like Prosper in Birmingham, Alabama, for example, to provide access to practical resources like virtual mental health groups, career matching services, and a community food bank because everything – having a person to talk to, a job to pay the bills, a place to get food for the family, etc. – can impact our community’s mental health.

Tiffany Whitlow (image via Tiffany Whitlow)

Part of your work is to empower people to make better-informed mental health decisions. What are some of the most significant barriers to people receiving the care they need?

We want to empower the Black community to make better-informed decisions about their health in general, including mental health, because we know from our community members’ experiences and stories that mental health can be affected by everything that’s going on in your life. We also know from research that Black adults are more likely to have feelings of sadness, hopelessness, and worthlessness than white adults, and yet, only one in three Black adults with mental illness receive treatment. There could be several reasons for this, including cultural stigma (that seeking help is a sign of weakness), lack of mental health professionals who can understand Black people’s lived experiences without personal biases and support them effectively, and socioeconomic disparities (which can translate to real-life issues like not having health insurance or being able to afford therapy). So, we’re amplifying stories from our community members to show that it’s ok to be vulnerable with your health, we’re here to help you feel seen and heard, and we have resources that can help you (and the Black community in general) live healthier.

How do you work to shrink the stigma surrounding mental health?

In the Black community, some people might think of suffering in silence as having strength and speaking up and asking for help as weakness. There also might be some people who tell people that are experiencing mental health issues to “pray it away” or simply label them as “crazy.” But, the truth is that mental health issues are diagnosable and manageable, like any other health issues. So, we’re trying to reduce the stigma around mental health among our community and encourage people to be their own health advocates by sharing our community members’ stories – like in this video for example, where we discussed the impact of COVID-19 on the mental health of our community members.

On your website, you note that as little as 2% of the US population is currently a part of clinical trials, and only a fraction of that includes individuals from communities of color. How can better representation in clinical trials lead to better health care (specifically, mental health care)?

I think my story, as well as my co-founder Del Smith’s story, demonstrates how more inclusive clinical research can help improve the health of not just the Black community, but also communities of color at large. As a young mom, my son was diagnosed with asthma. When he was only an infant, I discovered that his asthma medication, which is widely used to prevent and treat wheezing and shortness of breath caused by asthma, was 47% less effective for Black people compared to white people. It was devastating and scary for me to learn that this treatment wasn’t providing the relief my son needed. I wouldn’t want any mother or person to go through the experience that my son and I did, and that’s what inspired me to create the NOWINCLUDED community, so that we can be informed and included in processes that affect our health.

When Black people and other people of color are included in clinical research, it can help researchers develop treatments that can potentially be more effective and safer for us – and this isn’t just limited to physical health issues like asthma, but mental health as well. As more researchers study the mental health challenges that Black people face, there’s more potential to have more effective tools and solutions for us. So, while it is completely up to each person in our community to make the decision to participate in clinical research or not, I encourage them to learn about what clinical research opportunities are out there and how our participation can help improve our community’s health.

Whitlow (image via Tiffany Whitlow)

NOWINCLUDED emphasizes communities of color “taking control of their mental health.” In your view, what does it mean for someone to take control of their mental health, and why is this important?

We want to empower our Black community and communities of color to take control of their health in general, mentally and physically, and that can look like different things. It can be learning about different disorders (including mental health disorders) even if you think you’d never have them – you can not only stay healthy by learning about how to prevent them, but also recognize them more quickly, hopefully, should you experience any symptoms. It can also be staying informed of how advances in our society can impact our health – for example, how artificial intelligence and machine learning can help reduce health disparities, with our input. It can be participating in clinical research after learning more about what it really means to be a part of it. All of this is important because we have the ability in each of us to work towards better health, for ourselves and even for our community. When we help educate each other and make sure we’re all making informed decisions, we can create generational health.

What would you say to the people reading this who want to get help, but have no idea where to begin?

I would first say I am proud of them for recognizing the need to get help and actively looking for help. This is the first step in taking control of your health and making decisions that can improve your health. I have a simple process that helps me through any decision and truly helps my mental health. That process is PAUSE, BREATHE, GO. First, you must pause and remember why you started, breathe and internalize your feelings, then go execute, go be great, go change the world! Pause- breathe- go, it’s as simple as stop, drop, and roll.

I think the Internet is a great resource to start, where you can find mental health services and organizations specifically created with Black people in mind, like Black Mental Health Alliance, for example. Another great resource is your own community, like your family, friends, and even NOWINCLUDED, so you can feel seen and heard by people who can potentially relate to your issues on a more fundamental, cultural level and maybe introduce you to resources and tools you might not have known before. Help is out there for you. You’re not alone.

Tiffany Whitlow is the co-founder of biotechnology research company Acclinate, and its associated community brand NOWINCLUDED – the online health community focused on empowering the Black community to make better-informed health decisions. Tiffany had experienced first-hand the lack of information in the Black health space, which is why she wanted to change medical systems and how the community finds, discovers and takes advantage of ways to improve and maintain their health.

What Does It Mean to Shrink the Stigma?

Nathan SmithLeave a comment

During Mental Health Awareness Month, there’s a lot of talk about shrinking the stigma. While it might look different than it used to, the stigma surrounding mental health is alive and well. While many would agree on how important it is to shrink the stigma, it’s easier said than done. Shrinking the stigma isn’t only in our words; it’s in our actions. So, what does it actually look like to shrink the stigma, and how can we contribute?

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The Camouflage of Self-Stigma

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I wish it weren’t true, but I’m extremely familiar with self-stigma. I’ve written about it before; in fact, I tried to break it down in a blog post last year. But as much as I’ve learned about how self-stigma exists in the world, I’m a whole different story. I have so much more to learn about how self-stigma exists within myself. How it moves, what it looks like for me and how to spot it when it happens.

Self-stigmatization about my own mental wellness disguises itself well. If it goes unchecked, this chain of events leads to negative thoughts and anxious spirals. It’s a lesson I’ve had to learn more than once, but it’s a valuable one. The camouflage of self-stigma has always been, and will likely always be, a challenge for me.

One misconception I’ve had to learn about self-stigma is the judgement that it entails. When I first thought about self-stigma (what it was, what it means), I compared it to negative thoughts, self-hate or self-loathing. I thought it was another version of not liking yourself, another catchy mental health term that just means we think we’re awful.

But actually, it goes much deeper than that. To borrow from my post last year about self-stigma, the American Psychological Association defines it as:

“Self-stigma refers to the negative attitudes, including internalized shame, that people with mental illness have about their own condition.”

American Psychological Association

Stigma is a mark of disgrace, of shame. A social stigma (straight from the Wikipedia itself) is “the disapproval of, or discrimination against, an individual or group based on perceived characteristics that serve to distinguish them from other members of a society.” If we’re exercising a stigma about our own mental health condition, in some way, we disapprove of it. And even though it’s a tiny aspect of stigma, that can be a lot to unpack for a person.

I’d like to think that I grow more comfortable with my mental health challenges every day, but that’s not true. I’ve definitely grown more comfortable over a long period of time, but every day isn’t a step forward. And when I make a misstep or feel like I’ve failed, I don’t always recognize it for what it is. A harsh word or mean self-critique comes in quickly and before I know it, I think I’m too good for my depression.

I’m quicker than anyone to judge what I perceive as “failures” when it comes to handling depression. I shouldn’t be doing that anymore, I think to myself. I’m past this; I’m better than this. I take a linear approach to a non-linear problem and not only do I not find a solution, but I dig myself in even deeper. It’s a misunderstanding of my own mental illness, and a misunderstanding of mental health challenges in general.

One of the core aspects of self-stigma, at least for me, is rooted in shame. Shame about my mental illness, shame about the challenges it creates. But also, shame because there’s still a small part of me that thinks I should be better than this. That I’ve learned enough about mental health that “these things” shouldn’t be happening. But that’s not true; it never was. Self-stigma hides itself, it shapes itself and it molds itself to look like something else. Acknowledging this shame doesn’t mean it’ll go away. But hopefully, means I’m better suited to handle it when it inevitably rears its ugly head once again.

"Judge people not by what they are, but by what they strive to become." - Fyodor Dostoyevsky quote

If We Know There’s a Stigma, Why Is It Still Here?

Nathan Smith1 Comment

When it comes to mental health, one of the things that is discussed a lot is stigma. The stigma surrounding mental health and mental illness comes up a lot in this space, and it’s something that can become impossible to ignore. But as much as people bring it up when we talk about mental health, the stigma continues to exist and cause harm to people who experience mental illness or other mental health challenges. So today I want to answer the question: if we know a stigma exists, why is it still here?

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The Constant Work of Shrinking the Mental Health Stigma

Nathan Smith4 Comments

As I thought about what to write on this week (I have some good posts coming up, so stay tuned!), one thing I kept coming back to was the work I’ve been doing as a Mental Health Advocate. When you’re in a space where people are so open to hearing your own mental health experience and sharing their own, it can make you think that there still isn’t a major stigma out there surrounding mental health. But there is, and in the past few weeks I’ve been reminded of why it’s important to always challenge that stigma wherever we see it.

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Becoming a Mental Health Advocate

Nathan Smith6 Comments

One of my favorite things in the world is writing about mental health. In the two and a half years since I started this blog, a lot has happened. I started writing this because I felt that I was finally in a place where I was comfortable enough to share my experience living with anxiety and depression. And while I’ve had my ups and downs, I’ve continued to grow as a writer, person and mental health advocate. Which leads me to the fun news that I’m here to share! Continue reading →

How to Fight the Mental Health Stigma

Nathan Smith1 Comment

I have battled mental health issues for more than six years and, for just as long, I have been battling the stigma of mental health. There are plenty of reasons as to why the stigma surrounding mental health continues to exist, but its results are usually the same. People are given an inaccurate picture of what mental illness looks like and, based on this depiction, they treat people with mental illness a certain way. This leads potentially making people feel ashamed of their struggles, and not seeking help for those struggles.

While progress has been made, the stigma surrounding mental health persists in our world today (which I wrote about on the blog last week). But there are several things you can do to lessen the stigma surrounding mental health. While not all of them are easy, any action taken toward shrinking the stigma goes a long way not only for that person but for any of us who are struggling with our mental health. Here are some things to try to lessen the mental health stigma:

Be Open and Honest

When someone asks you how you’re doing, it’s natural to say that we’re ‘fine.’ But if you’re with someone that knows you well and you feel comfortable around, it might not hurt to tell them how you’re really doing. People are afraid of the unknown, but when you thrust mental health into everyday conversation, it becomes easier for people to accept in time.

Word Choice is Important

Labels – and knowing the right labels – are important when it comes to mental health. Your friend being sad for a few hours doesn’t mean they have depression. I’ve heard people get called bipolar all the time if they act even remotely out of the ordinary. And of course, there’s the constant labeling of the mentally ill as ‘crazy’ – a misspoken phrase that unfortunately is quite common. Once you pay attention to the words you use, you can begin to recognize when people around you use language that’s hurtful to the mentally ill.

Mental Health is Equal to Physical Health

This is something that I personally try to encourage as much as possible – that mental health is just as important as physical health. Mental illness is a disease just like all the other physical diseases out there, it’s just harder to see. Once people around me understood that I live with a disease, it was easier for them to accept why I sometimes couldn’t come to parties or hang out with them.

It’s All Relative

Mental health is not a one-size-fits-all type of thing. People are all on different journeys and in different places with their mental health, and what works for one person may not work for another. Recognizing that we’re all individuals with our own stories might seem like common sense, but mental health is something that’s often put into a box because of the lack of awareness or education. Don’t be afraid to tell your story and let people know that it’s just that – your story.

These are just a few of the many ways we can work to shrink the stigma. It’s hard to know what will work best in a given situation but one thing is certain – that stigma won’t go away if we don’t try to get rid of it!

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Is Mental Health Still Stigmatized?

Nathan Smith9 Comments

I have a short answer and a long answer to the question above. The short answer? Yes, it is. The long answer? Give me a second.

When I ask questions in my posts, I often turn to Google to gauge how legitimate my question is. This time, though, I looked for something more specific – the dates of the results on the search page. I knew there would be articles, posts and web pages asking my same question, but I wanted to know if they were old or new. And what I found was that there was a mix of both. I’d see a study from 2012 next to a blog post from 2015 all jammed between two articles from May 2019. What did that show me? That this question is an ongoing discussion about how we deal with mental health in the United States.

The long answer to this question: while it is still stigmatized, it seems like that stigma isn’t as strong as it once was. That’s what I feel comfortable saying.

That answer doesn’t sound long, does it? Look at what I wrote though. The stigma isn’t as strong as it once was. What I’m saying is that I believe it’s not as bad as things used to be. Usually, that would imply that things are good in the present. But the argument that things are better than before is a dangerous argument to make (see: most of History). Will taking that approach with mental health help in the long run?

I’m encouraged at the number of celebrities who are being more open about their mental health. I feel proud when I see a professional athlete say they’ve gone through tough periods of depression or anxiety because I was an athlete growing up; I understand how brave you have to be to do that. I know these stories help other people who struggle with their own mental health and that’s wonderful (I can’t emphasize that enough. It’s truly wonderful). But we also have to acknowledge that if there wasn’t such a strong stigma, a famous person talking about mental health wouldn’t be so groundbreaking in a country where 1 in 5 U.S. adults experience mental illness every year. And yet, it is.

Has the stigma surrounding mental health decreased? Sure, you could say that. But if you do, look at where it used to be. That might reframe how you answer the question. And honestly, there’s plenty of ways to discuss/debate this topic. Is the stigma decreasing? Are people being more open about mental health? How can we reduce the stigma, or just overcome it?

All are valid questions, but there’s a reason I asked the question the way I did – I wanted you to react. When you read that question, you had an instant reaction. It might have been yes, no or somewhere in between, but you thought something. A key way to break down a stigma – any stigma – is to talk openly about it. So we need people to think about it and talk about it. Whether they think they’re right or wrong, opinionated or not. Because as long as mental health is stigmatized, there’s still work to do.

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