When were you diagnosed with HDS?

I was 38 when I was diagnosed. It was May of this year. It’s something you’re born with, it’s genetic, but it has always been misdiagnosed. I actually diagnosed myself almost two years ago, but it takes so long to get an official diagnosis because it’s so rare. You have to go through the unnecessary ups and downs and specialists to rule things out and rule things in. I’m still reading to see if it’s tied to my heart condition, where my body thinks it’s having a heart attack every day. The arteries in my heart spasm and close and that was diagnosed about 2.5 years ago. I’ve had it for 4 years, but it also took a while to be diagnosed, misdiagnosed, and then finally diagnosed.

Since you were misdiagnosed so many times around your heart condition, how were you functioning prior to it? And when you were finally diagnosed, was there a sense of relief?

Prior to all this, I was diagnosed with major depressive disorder as a result of discrimination, harassment, and bullying in the workplace and also discrimination in my doctoral program. So I already was leaning into depression. Major depressive disorder basically means you’re always experimenting with a state of suicidal ideation or fully in suicidal ideation, or figuring out how to end your life. It’s something that people can work through and I’ve been able to work through several times. So with that diagnosis, once I was able to change my career path and find a healthier workplace, things started to improve mental health-wise. And that was my own business.

“My mental health is better, but a year into my own business, my heart problems started.”

Then I had to learn how to live with chronic pain, discomfort, and disability. And that obviously wasn’t part of the plan, which is devastating as a Virgo. Now my mental health is about how can I manage my pain and what ways can I bring in joy, knowing that some days are going to be better than others. But I’ve always lived in a baseline of pain. I also live every single day with a risk of death. Obviously, we’re still in this pandemic. So, I have an additional layer of death. I wouldn’t make it if I got COVID, even being vaccinated, it could induce a heart attack. There’s so much that can happen. And so I have been in isolation for a good part of the pandemic and semi-isolation now, even with my third shot

What are some modes of healing that support your physical and mental health?

I have been doing acupuncture since 2006. It was initially for some inflammation that I had, which I didn’t know was HEDS. Then that turned into having surgery, and all of these other things that became part of my life.

“I use acupuncture for inflammation.”

I use it for stress relief. I use it for my overall mental health. I use it as a way where no one can touch me, which I need in my life because I’m an in-demand person. So my phone is on silent. The door is closed, the music is playing, and I actually go to sleep. Recently I switched my acupuncturist. I realized I had to find an acupuncturist who was more culturally appropriate because my regular acupuncturist was a white woman and she would say microaggressions that would take away from my healing experience.

How did you find your team of experts that you came to trust to care for your health and wellbeing?

I have formed a pretty great medical team and that’s because of my personal advocacy. I deserve amazing doctors who see me and value me. For example, every month I get injections in my lower back for my hypermobile spine. It’s not fun. It’s actually quite painful, but I have a high pain tolerance and this allows for me to have less pain. It takes a couple days for the effects to set in place. My doctor is a double doctor because he’s an MD and a PhD, so he respects me because of my doctoral degree, but he’s fascinated by how I’m able to function with HEDS, while dismantling white supremacy.

What brings you joy?

I love, love, love, love, love, vintage clothes. It stems from my love of fashion. I’ve been going to Hello Vintage in Oakland, California for 5 years now. I have a really great relationship with the owner of the store, Emily, who also has one of the conditions I have around our hearts. We call each other heart sisters. So we will bond and we’ll dine. I get to support a woman-owned business, an LGBTQ plus-owned business, and connect via the heart.

How would you describe your mental health, currently?

My mental health is pretty good. I was in a place of experimenting with suicidal ideation in July, but I’m happy to say I have pockets of joy. I feel that I’m at peace with a lot of things. I’m doing what I can to say no a lot more. And I know people think that’s easy, but not for me. I’m a founder and CEO. So I can’t always say no.

How does intimacy and relationships impact your mental health?

It’s been really hard relationship-wise to find a partner who understands my disability, who understands my role as a founder and CEO and all the other points of intersectionality that I have. That’s been really tough and it’s something that I want, but also I’m at peace with if it doesn’t happen because life goes on. In the past year, I have been doing things that I always said I would do in partnership. I bought a home and I always thought I wanted to buy a home with a partner. But I can do it myself.

Also, I feel so honored to have friends that check in on me. When it comes to my family, I’ve always been the strong one. I’ve always been a person who can solve all the problems and lead the events and buy the food for the holiday celebration. And so, going back to what I said earlier, I’m saying no more to those things and having them also check in with me, so we have this reciprocal kind of check-in and relationship.

What’s your take on medication, like antidepressants, and supplements?

I think all of it is great. The most important thing is that people find what works for them and really do what they can to minimize their own internal stigma. I use supplements because I have a lot of trauma around finding the right level of medication because I’m on medication for other things. I was thinking about getting on an antidepressant, but it would affect my heart pill that I take every day. It took a year and a half to get to this level that works. So I don’t have it in me. But I’ll up my supplement or go into more talk therapy or take breaks or walks to make it work.

“I would say experimentation is really important.”

I’ve definitely had therapists in appointment one who say you need drugs. So I’ll ask for the alternatives. What are my options? How does acupuncture fit into it? I don’t look like I have a disability, but I take nitroglycerin and I always have to have it with me. Nitroglycerin is a life-saving medication for people who have heart attacks. It’s prescribed to me, but I make sure I talk about it so people can take away the stigma or the stereotype that goes along with it.

The supplement I take is 5-HTP. It’s a serotonin inhibitor that either increases your mood or helps you sleep. It depends on how much you’re taking and how you’re taking it. I’ve been using that for many, many years and it’s had a positive impact.

What makes you stressed or anxious and therefore impacts your mood and mental health?

America’s healthcare system. I have 3 physical therapists, 4 specialists, and a primary doctor. I’m navigating so many different things and I’m not seeing someone just once a year. So that brings a lot of stress and frustration.

Another stressor for me is that I dismantle white supremacy every day. I’m in a place where I’m constantly traumatized and triggered and most of the time, it’s to be expected, but sometimes I have to figure out how to get it out so I can go back into doing the work.

The third stressor is I run a business. So I’m always, always, always, always, always thinking about money, even though we have it. I have people’s livelihoods in my hands.