Living with POTS
Ila’s story
“It’s all in your head”, “You don’t look sick” – phrases that many with invisible illnesses like POTS hear too often.
Living with conditions that others can’t see comes with a wave of misunderstanding and a serious lack of empathy. We spoke with someone who’s breaking the silence and raising awareness with humor and resilience. This is Ila’s story:
Meet Ila
At 25 years old, this lively soul from the US is taking on life with POTS (Postural Tachycardia Syndrome) and Ehlers-Danlos Syndrome – all with a sense of humor that’s as strong as her spirit. After earning her Bachelor’s in Rehabilitation Psychology, she recently accomplished grad school after having to hit pause on it for a while.
On social media, Ila talks openly about her journey, offering support with a large dose of humor. She’s also the founder of Chronic4U Apparel, a brand dedicated to raising awareness for invisible illnesses through fun, expressive clothing.
Her diagnosis journey spanned 14 years, with countless misdiagnoses, until she finally found clarity. But let’s hear more directly from Ila herself.
The journey to diagnosis
“It was a long, frustrating journey to find someone who understood what I was going through and could properly diagnose me with POTS.”
When I was seven years old, I started experiencing dizzy spells, tingling sensations, and my heart would race constantly, even when I wasn’t exerting myself. Despite these symptoms, doctors consistently told me it was just anxiety.
It took 14 years to finally receive a diagnosis. During that time, I saw numerous doctors and specialists, but my symptoms were often overlooked or misattributed. It was a long, frustrating journey to find someone who understood what I was going through and could properly diagnose me with POTS.
Never heard about POTS?
“Many people think POTS is just about feeling dizzy when you stand up too fast, but it’s so much more than that.”
When I was first diagnosed, a lot of people assumed if I just had more salt, I’d be fine. While hydration and salt intake are important, POTS requires a lot more management than that. It involves monitoring what you eat, staying hydrated, exercising regularly, and building muscle to help with blood circulation.
POTS doesn’t affect just one type of person—it can impact anyone, regardless of age, weight, height, or race. There are a lot of different causes and triggers, and it can happen at different stages of life. It’s important to understand that it’s a complex condition that affects nearly every aspect of daily life.
My daily life
“It’s a constant balancing act, but over time, I’ve learned how to manage it and adapt to my new normal.”
POTS has dramatically changed the way I live. My days are dictated by my symptoms, so I have to be very intentional about my health.
I follow a strict hydration regimen, ensuring I drink enough fluids and take electrolytes throughout the day. I can’t stay still for too long – I have to move around every 30 minutes to keep my blood circulating. I also have to be mindful of what I eat because certain foods can trigger my symptoms. Standing in place, even for short periods, can lead to lightheadedness or fainting, making everyday tasks like grocery shopping or standing in a checkout line difficult.
On top of that, I take multiple medications to manage symptoms, but there’s still a lot of trial and error involved. POTS also forces me to plan everything in advance. I have to make sure I have access to water, salt, and a place to sit down. It’s a constant balancing act, but over time, I’ve learned how to manage it and adapt to my new normal.
Using a mobility aid
“It’s given me the ability to do things that would otherwise be impossible or incredibly difficult.”
Using a rollator has been life-changing for me. It’s given me the ability to do things that would otherwise be impossible or incredibly difficult, like standing in lines or walking longer distances. I always say it’s like having a portable chair with me wherever I go.
My byACRE Carbon Ultralight rollator has made a huge difference compared to my old one – it feels like it was made for me, not for someone much older. It’s lightweight, easy to maneuver, and doesn’t make me feel self-conscious. It’s actually kind of stylish, and that’s helped me feel more confident using it in public.
Instead of feeling embarrassed about needing a mobility aid, I’m proud to use something that allows me to maintain my independence and take control of my condition.
To everyone who’s newly diagnosed
“It might feel overwhelming right now, but over time, you’ll adjust and find ways to live a fulfilling life.”
First, give yourself grace. POTS can be really challenging to manage because it looks different for everyone. There isn’t a one-size-fits-all treatment plan, so you’re going to go through a lot of trial and error to find what works for you.
Be patient with yourself during this process. It might feel overwhelming right now, but over time, you’ll adjust and find ways to live a fulfilling life. Just because things are different doesn’t mean they’re bad – you’ll find new ways to thrive.
Follow Ila
Stay connected with Ila by following her on social media, where she shares her journey with POTS as well as tips and tricks in a fun way. Her inspiring content shines a light on this often-overlooked condition, raising awareness and spreading positivity, one post at a time!
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@chronic4u |