SIENA TOMPKINS: ‘MY HEALTH DOES NOT DEFINE ME, IT’S A PART OF ME.’

   At the start of her freshman year, a usually healthy Siena Tompkins was hospitalized with a pulmonary embolism. Then, “instead of things getting better,” Siena said, “they only got worse.”

        Since then, Siena has been diagnosed with a whole host of other chronic conditions that impact her daily: Postural Orthostatic Tachycardia Syndrome (POTS), chronic migraines, endometriosis, mast cell activation disorder, Ehlers Danlos Syndrome (EDS) hypermobility type and a neurogenic bladder. 

        POTS is an autonomic nervous system disorder that causes Siena to faint, often multiple times a day.

        “Things that normal people's bodies don't have to think twice about, my body does,” Siena said. “For example, my body struggles to control my heart rate, my blood pressure, my body temperature, my digestion, even things like seeing and breathing.”

        Pain management for chronic illnesses often looks different than many short-term pain management plans. Because opioids are not an option for long-term pain management, Siena has had to learn new ways to live with her pain.

        “There's no blueprint for how to deal with (the conditions) and there's no one set way to treat any of them, and it takes a long time of trial and error to figure out the balance that works, and it gets really discouraging,” Siena said.

        With all of these diagnoses, Siena had to learn how to live a new type of life dictated by hospital visits and chronic pain.

        “The first year I really struggled with the acceptance piece, because I was so determined to have what I thought of as a normal high school experience/normal teenage life,” Siena said. “I would push myself way too hard, which ultimately led to my conditions becoming worse.”

        Siena said one of the most helpful things anyone has ever said to her was during a conversation she was having with her mom before the pandemic. She had had to cancel plans with a friend because she wasn’t feeling well — she had already fainted twice that morning — and was worried she would seem flaky.

        “When I was first learning how to navigate life as a disabled person I would push myself very hard and push myself very frequently and end up causing more harm,” Siena said. “When I was talking to my mom, I was like ‘what if people don’t get it, what if I can’t explain it,’ and I was in tears and she was like ‘Siena, you are not unreliable. Your health is, and that is out of your control.’”

        Despite this newfound pain and the lifestyle changes that came with it, Siena never lost her determined and empathetic spirit. One of her close friends, Lulu Priede, said she admires these qualities in Siena.

        “Sienna I seriously think is one of the most powerful and resilient people I've ever met. I'm not even just saying that to make it sound extra,” Lulu said. “She's a very resourceful person and she's very smart and creative and giving.”

        When another one of Siena’s friends, Lawlli Manes, met her, she didn’t know about all of her recent diagnoses and health issues. 

        “I didn't realize how incredibly sick she was, how much she was going through, and I saw her one time at a football game and we hugged and we had this like short little interaction,” Lawlli said. “I went along with my day, but I always reflect on that very first moment of meeting her.”

        Lawlli said Siena’s warmhearted personality shines through in her magnetic smile.

        “The thing that drew me in was that she has the gorgeous glowing smile that just seems so genuine,” Lawlli said. “A lot of people do not have a very genuine looking smile and she does, and to just see her smile and laugh and hug me and to be at a high school football game while just first starting to deal with these things.”

        Siena and Lawlli didn’t grow close until the pandemic when they began FaceTiming almost every day.

        “We got really close and she invited me to come live in her house because I was homeless at the time,” Lawlli said. “We'd only known each other maybe two or three months by the time that she offered her house to me, it was very quick.”

        While they lived together, the two shared the same room, so Lawlli was a first-hand witness to all the ups and downs Siena’s health throws at her.

        “She is incredibly empathetic and can see everyone's struggles because she knows how hard it is when people don't see yours,” Lawlli said.

        Lulu said Siena is proactive about taking care of herself and anticipating her own needs. She is great about communicating her limits with her friends and providing them with resources about how they can help her.

        “She does a good job of not making her issues that she has define her, which I really respect,” Lulu said.

        Though her health may not define her, it has helped shape her plans for the future. Siena has always known she wants to enter the healthcare field, but her firsthand experiences as a patient have strengthened this desire in her. One night during her first hospital stay, she recalled, she started having a breakdown and made everyone leave her room — but her nurse remained by her side and held her hand. 

        “She just provided a type of comfort that I didn't know that I needed. She told me that I was in the safest place that I could be, being taken care of by incredible teams of doctors and nurses and respiratory therapists and physical therapists and certified nursing assistants,” Siena said. “They were on my team, they were on my side and they were going to do anything and everything that they could to help me.”

        At one point, remembering how Siena’s dad had told her about Siena’s love of cereal, her nurse left to get Fruit Loops and Sprite.

        “That night I decided that I wanted to be a pediatric nurse. That was the night where I finally felt like I figured out what I'm passionate about, and what I want to make a career out of,” Siena said.

        Siena’s conditions, though debilitating, are not very noticeable from the outside.

        “I'm legally disabled by my conditions, and just looking at me you wouldn't assume that I was disabled, you would assume that I am a healthy able-bodied teenage girl, except for the tube that sticks out of me but that's covered by my shorts,” Siena said.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

        All of her new experiences inspired Siena to become more educated on her rights as a legally disabled person.

        “One of the things that I’ve become most passionate about because of my journey is disability advocacy and disability rights,” Siena said. “I have spent countless hours educating myself on my rights as a disabled person and the rights of different types of disabilities under the American Disability Act (ADA).”

        The ADA is considered an “equal opportunity law,” according to the United States Department of Justice Civil Rights Division, that protects people with disabilities from being discriminated against, including in their workplace.

        “She does a really great job of using her voice to speak about her issues and people who might have similar issues. She has a beautiful soul,” Lulu said. “She's really resilient. I know that I've looked up to her for sure as a role model when I'm feeling down.”

        Once Siena started working at her current job, she said she finally had a place to put all of this knowledge to use. At first, she said, it was hard to ask for what she needed.

        “I have had a lot of internal guilt and shame and frustration about the amount of times that I'm scheduled to work, and then I have to call off as I'm not feeling well, or having to take two weeks off at a time because I have surgery every couple of months to change the tube,” Siena said.

        Even though Lawlli and Siena don’t live together anymore, they are now co-workers. Lawlli said she loves working with Siena and is glad she is there to be able to support her.

        “It's just amazing to see her work because she'll have moments where because I've gotten very close with her I can see when she starts to feel worse. I can see that shift on her face,” Lawlli said.

        Siena said her managers have been amazing about not only understanding and accommodating her needs, but also treating her like any other employee.

        “They didn’t try to cushion anything because I was disabled, which might sound like a bad thing,” Siena said. “But actually, I really appreciated it because I felt like they were treating me like they would treat any other person they had hired. And that was what I wanted.”

        When she started to treat herself with the same compassion she aspires to treat others with, Siena said she found it easier to advocate for herself.

        “When I saw it through the lens of ‘advocate for yourself the way you would advocate for another disabled teen, advocate for yourself the way you would advocate for another disabled employee,’ I started to allow myself the same love and support and respect that I would show to others that are disabled,” Siena said.

        By raising awareness and talking about her own disability, Siena said she hopes to remind others that they are not alone.

        “Disability is left out of a lot of conversations and the world is very obviously not designed for disabled people to survive or thrive in. It’s not about having ourselves change to fit the world, it’s about the world having to change to fit for us,” Siena said. “If I can do that by taking a little more time to talk to someone, that’s what I’m going to do because, ultimately, we will all be better for it.”

        Invisible disabilities, Siena said, can be very isolating because you never know what someone is going through just by looking at them. It is very easy to feel like you are going through it alone and that you are the only one experiencing what you’re struggling with. This is why Siena is so open about her experience and focused on advocacy: she sees sharing her story as a way to let others know they are not alone.

        “If just one more person can feel just a little less alone because they know about what they’ve been through, it’s worth it,” Siena said. “The power that we draw from each other and we inspire from one another is mindblowing.”