Anxiety and Chronic Illness: Living with POTS, EDS, and the Emotional Weight That Comes with It
Anxiety and Chronic Illness: Living with POTS, EDS, and the Emotional Weight That Comes with It
Living with a chronic illness is challenging enough. But when that illness is invisible—when you look fine, but inside your body feels like it’s in chaos—it adds a whole other layer of complexity. Conditions like POTS (Postural Orthostatic Tachycardia Syndrome) and EDS (Ehlers-Danlos Syndrome) don’t just affect your body. They also impact your mental health, often in ways that are hard to explain to others.
For many people with POTS and EDS, anxiety becomes a constant companion—not always because of the illness itself, but because of the unpredictability, isolation, and invalidation that often comes with it. If you’ve ever felt overwhelmed, anxious, or emotionally exhausted while managing your physical symptoms, know this: you are not alone, and it’s not all in your head.
What Are POTS and EDS?
POTS (Postural Orthostatic Tachycardia Syndrome)
POTS is a condition that affects the autonomic nervous system, leading to symptoms like:
Rapid heart rate upon standing
Dizziness or fainting
Fatigue
Brain fog
Nausea
Exercise intolerance
EDS (Ehlers-Danlos Syndrome)
EDS is a group of connective tissue disorders that can cause:
Joint hypermobility
Chronic pain
Fatigue
Gastrointestinal issues
Skin fragility
Frequent injuries
Many people with EDS also experience autonomic dysfunction, which means it’s not uncommon to have both EDS and POTS—a duo that can be incredibly taxing physically and emotionally.
The Connection Between Chronic Illness and Anxiety
Anxiety is not just a mental health issue—it’s often a natural response to ongoing physical distress. Here’s why people with POTS and EDS may struggle with anxiety:
1. The Body Feels Unsafe
When your heart races unexpectedly, or you suddenly feel like you might faint, it’s hard not to feel anxious. Your body sends signals that something’s wrong, and your nervous system responds with fight-or-flight mode—even if the threat isn’t external.
2. The Unpredictability Feeds Fear
You might feel fine one moment and be flat on the floor the next. This unpredictability can create anticipatory anxiety: constant worry about when symptoms will flare or if you’ll be able to make it through the day.
3. Living in a World That Doesn’t Get It
People may downplay your illness because they can’t see it. You may hear things like, “But you look fine” or “You’re too young to be this sick.” This invalidation can lead to self-doubt, frustration, and anxiety about how to advocate for yourself.
4. The Emotional Toll of Chronic Pain and Fatigue
Being in pain or exhausted day after day takes a toll. It can be lonely, isolating, and demoralizing—especially if your illness limits your ability to work, socialize, or keep up with everyday responsibilities.
How Therapy Can Help When You’re Living with POTS and EDS
You can’t always control your physical symptoms, but you can gain tools to manage the emotional weight they bring. Therapy can offer a safe, validating space to process everything you’re carrying.
Here’s how it can help:
1. Making Sense of Your Experience
A therapist can help you explore how your illness impacts your thoughts, emotions, identity, and relationships. Sometimes just having someone get it makes a huge difference.
2. Managing Health Anxiety
Therapy can help you learn how to separate real physical danger from anxious spiraling, giving you tools to calm your nervous system even when your body is flaring.
3. Reducing Isolation
Talking about your experience in therapy can help combat loneliness and validate your reality—even when others around you don’t fully understand.
4. Building Coping Strategies
From pacing your energy to setting boundaries and practicing mindfulness, therapy can offer practical tools to manage stress, avoid burnout, and feel more in control
5. Supporting Self-Advocacy
Whether it’s navigating doctors, explaining your illness to loved ones, or managing work and school, therapy can help you find your voice and advocate for your needs.
Practical Tips for Managing Anxiety with POTS and EDS
While therapy is incredibly helpful, here are some day-to-day tools you can also try:
Grounding Techniques – Use deep breathing, 5-4-3-2-1 exercises, or gentle stretching to calm your nervous system.
Honor Your Limits – Rest isn’t weakness. It’s a strategy. Pacing is your friend.
Create a Flexible Routine – Structure helps anxiety, but flexibility is key when living with chronic illness.
Find a Support Community – Online or in-person groups can provide connection and tips from others who truly understand.
Track Patterns – Use a journal to notice how your physical and emotional symptoms interact. Knowledge is power.
Final Thoughts: You Are Not Broken
If you’re living with POTS, EDS, or any chronic illness, and you’re feeling anxious, discouraged, or emotionally drained—know this: you are not weak, you are not dramatic, and you are not alone.
Anxiety isn’t just in your head—it’s in your body, in your lived experience, and in the way the world responds (or fails to respond) to your reality. But healing is possible. Therapy can help you find your footing, reclaim your sense of self, and move forward with compassion for your body and mind.
You deserve support that sees the full picture—you deserve to feel heard, understood, and empowered. If you’re ready, therapy can be a powerful step forward. 💙
