Living with Invisible Illness | YMyHealth

Dr. Alexandria Yarborough is a Pharmacist in Charge in South Carolina and a member of the YMyHealth team. She's also living with POTS (Postural Orthostatic Tachycardia Syndrome), an invisible illness that affects many young adults who appear healthy on the outside but face significant daily challenges. In this interview, she shares her experience navigating work, social life, and daily routines while managing a chronic condition that others can't see.

As a fellow millennial, what are some of the most common phrases people have said to you about your health throughout your journey with POTS?

Alexandria: I think it was a lot of "you look perfectly fine" or "you look healthy." That's a big one that I would get a lot, or "you're too young for this," or "you're still doing what you have to do, so maybe you aren't as sick." Those weren't necessarily directly said, but a lot of times they were implied just because if you were sick enough, you almost had to prove it.

And that's just kind of a really strange concept that we don't see in any other situation. If someone has mobility issues and they're in a wheelchair, you don't ask them to prove that they can't walk or that they're having trouble. Or if someone has some kind of other illness that is very apparent. But if it's something that someone can't see, it's as if they don't believe it.

Even though you were going to work and going out with friends and looking healthy on the outside, what have been some of the symptoms that you've experienced internally that people had no clue you were experiencing?

Alexandria: Physically, I would have an increased heart rate, and until I became pretty well managed, which is what I consider myself now, I didn't know when it would flare up or what was going on—it could be any time for any reason that I wasn't aware of. I would also have temperature issues where I would get extremely overheated or too cold, or sometimes I would just get extremely nauseous.

And it's just really hard to plan your life around things like that. You also develop mental symptoms. You become anxious just because—do I need to tell someone about this? Do I need to tell everyone what's going on? So that's difficult. You're dealing with both the physical things—increased heart rate, temperature issues, nausea—and then also the anxiety and how that's intertwined with everything. There's just a lot going on, and you don't really know how to deal with it.

As a pharmacist working nonstop for hours at a time, what does your daily routine look like to prevent flares so that you can serve your customers?

Alexandria: It requires a lot of preparation—something I still have to plan for extensively. I have to pack certain lunches. I used to just grab lunch at work, which was no big deal, but now I know that I need to rest during lunch if I'm able to get my full 30 minutes, so I have to prepare accordingly. I'm also not able to take some of my ADHD medication, so now I have to supplement with a certain type of energy drink that provides a specific amount of caffeine to help with my fatigue.

So I have to make sure I pack those every day. And then also, I do have an accommodation at work, which is great. I have a stool, but it's not very helpful because I can maybe sit for just a few minutes to verify some prescriptions, but then I have to get up to go counsel someone or to help at the register, or to give an immunization. And so as helpful as it is, it's almost kind of not because I'm going up, down, up, down, instead of just trying to be stationary.

What was it like navigating workplace accommodations?

Alexandria: So I am thankful that my company was able to approve my accommodation, but with any type of accommodation, it still takes time and effort. You have to fill out the appropriate paperwork. You have to get your doctors involved, and you know, that's just only part of what they do on their day to day. So, you know, it takes a little bit of time to get in contact with them. And then also you have to reassess every so often.

And then, you know, I am approved for the stool, but there's really no other available accommodation. I'm not able to work from home. I work in a retail pharmacy, and I'm not able to do that unless I'm in that space. That's kind of one of the downsides of it is there isn't anything that can be done. I would have to dream it up, I guess.

As a community pharmacist, Dr. Yarborough loves her career, but she has to spend hours at a time on her feet at work both dosing prescriptions for patients and counseling them. Due to the effect of POTS on blood flow, it is more comfortable for the body to be in a seated position—something that has been a challenge for her and other patients living with POTS to find accommodations and adjustments for in their respective careers.

What are some of the ongoing medical requirements that people don't see that you have to maintain even when you're doing well?

Alexandria: One of the things that I don't think a lot of people realize is the doctor's visits that I still have to keep up with, even though I am managed pretty well. So I have to go to the sleep doctor every six months. I have to get shipped this special medication that I have to mix up and take every night. So that is related to my POTS. I also have my cardiologist visits that I have to do to be prescribed my medication that I take every day.

So even though I'm on a path right now where I am doing well, it could change tomorrow, and I could not be doing as well. And I still have to keep up with these things in addition to like a full-time job and my kind of day-to-day management.

What does daily management look like in terms of preventing flare-ups?

Alexandria: So I just have to kind of know my limitations, which is really hard to do because when I'm feeling well, I want to be able to do it all—I feel like my old self, but that's pretty hard. So, for instance, I used to only do grocery delivery, but now I actually go and get groceries. But that's still not every time, and so I know if I do that, then I don't need to walk my dogs that day.

And so just kind of putting those limitations on yourself is really hard, but it's something I have to do because if not, I don't want to risk having a flare-up because then I won't be able to do anything for the rest of the day or even into the next one.

How have you navigated social life with POTS symptoms and trying to prevent flare-ups?

Alexandria: The biggest thing is that I have to communicate with everyone if I am doing something. You know, I have a certain bedtime that I have to adhere to. Sometimes there might be a little bit of flexibility, but no more than like 45 minutes to an hour just because I know if I don't get that rest and if I'm not able to take my medication a certain amount of time, I'm not going to be able to function at all the next day.

And that could just result in fatigue, or that could result in an increased heart rate. And so it's just not something I can risk. So anytime I go out, people are pretty much aware that I'm only able to have like one adult beverage if I want to, which made for a very chill bachelorette, but also that I do have a certain bedtime.

So I am lucky that I have a great core group of friends, but it is something that if I didn't have that, or if I was in a new city trying to meet people, I wouldn't necessarily want to disclose, but it's necessary just because this is a part of my life now. And so I don't get to go to those late-night movie premieres. I don't get to stay up too, too late to watch different things on TV or go to a certain event. So it kind of stinks, but my health isn't worth the risk.

Alexandria with her awesome group of friends at her bachelorette party.

How can people who have friends or family members living with an invisible illness be most helpful to them?

Alexandria: I think the biggest thing that they can do is just ask us what we need. There have been a lot of issues, I think, across the board with anyone with an invisible illness of toxic positivity. Like "you can do it, just keep pushing through, you try harder, you know."

You're doing great, and those things can be helpful at times, but when we're having a rough day and we're needing to rest and we're trying to focus on rest is productive, "just keep going and push through" isn't very helpful. But we might need a Netflix recommendation, or we might need you to help us plan an easy dinner, that's a couple of ingredients, but we don't know.

You don't need to add to our mental load, just ask us what we need and be direct. And I mean, I know I'm happy to tell you, or that might be something where some people do struggle, but just don't try to guess what we need because it might actually be harmful.

I realize everyone has great intentions, but if they're not someone who's living with this day to day, sometimes it can just be really challenging for us to hear.

Want to hear more from Dr. Alexandria Yarborough or POTS? Check out the YMyHealth podcast?

Living with Invisible Illness: A Q&A with Dr. Alexandria Yarborough on POTS