Imagine waking up every morning unsure of what your day will look like—will you be able to get through it, or will your body have other plans? For those of us living with dysautonomia (and/or similar chronic conditions), this is a daily reality.
Dysautonomia is a broad term that describes a group of conditions where the autonomic nervous system (ANS) doesn’t function as it should. Since the ANS controls vital functions like heart rate, blood pressure, digestion, and temperature regulation, living with dysautonomia can feel like trying to navigate life with an unpredictable compass.
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The information in this blog post is provided for educational and informational purposes only and should not be construed as medical advice. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you have read online. The author of this post is not a licensed medical professional and does not assume any liability for any actions taken based on the information contained in this post.
The Struggles of Invisible Illness
One of the most challenging aspects of living with dysautonomia is that, to the outside world, it often remains invisible. You may look perfectly healthy, which can lead to misunderstandings or even skepticism from those around you. Friends, family, and even healthcare professionals may dismiss your symptoms as stress, anxiety, or general fatigue.
How do you deal with medical gaslighting and dismissive doctors?
The hidden nature of these conditions often make people feel like they have to constantly explain or justify their experiences, which adds an extra emotional burden on top of it. Conditions like neurocardiogenic syncope (NCS), inappropriate sinus tachycardia (IST), postural orthostatic tachycardia syndrome (POTS), and other forms of dysautonomia can dramatically affect daily life, even if the struggles aren’t immediately visible to others.
This disconnect between how you look and how you feel can be isolating. You might find yourself canceling plans at the last minute or you might hesitate to share what you’re going through, afraid of being misunderstood. Educating the people around you is a crucial step, helping to generate more empathy and understanding.
Unpredictable Symptoms
Living with dysautonomia can often feel like being on a rollercoaster, with no control over when the next drop or curve is coming. Symptoms change not only from day to day but sometimes from moment to moment. You might feel relatively okay one minute and then, without warning, experience a rapid heart rate, dizziness, or a drop in blood pressure. Standing up too quickly might cause blood to pool in your legs, leaving your brain without enough oxygen and triggering symptoms like lightheadedness or fainting.
One of the most common and debilitating symptoms of many forms of dysautonomia is orthostatic intolerance, the inability to remain upright without discomfort. This makes simple activities, like standing in a queue or just walking from one room to another incredible challenging. Heart palpitations, nausea, headaches, or digestive problems can also arise unexpectedly, leaving you to constantly adjust your plans around what your body will allow you to do on any given day.
This unpredictability means you have to navigate daily life carefully, often with little to no warning about when or where a flare-up might strike. Planning ahead is more like a balancing act, with even simple outings like going to the grocery store can feel daunting.
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The Mental and Emotional Toll
While dysautonomia manifests in plenty of physical symptoms, there’s a heavy mental and emotional impact, too. The unpredictability of the illness can lead to heightened anxiety, especially when you never know how your body will respond form one moment to the next. Social situations, in particular, can become stressful, as the fear of fainting or otherwise flaring up in public can lead you to avoid things things in the first place, with can create a sense of isolation over time.
Depression is also common among people living with dysautonomia. It’s difficult to come to terms with the limitations the condition imposes, especially when you compare our current abilities to the life you led before the onset of symptoms. Grieving the loss of your former self is a natural part of learning to live with dysautonomia, but it often takes a toll in the meantime.
Feelings of guilt can often arise, too—guilt for not being able to keep up with work, for canceling plans, or for relying on others for help. These feelings can exacerbate the emotional burden, but finding a support network, whether through friends, family, or online communities can make a difference.
Many of us with dysautonomia can also benefit from therapy as well, where they can talk through their anxieties, frustrations, and the emotional complexities of living with chronic illness. Acknowledging this emotional and mental impact of dysautonomia is an important step towards healing and managing your illness.
Adapting to Your “New Normal”
Living with dysautonomia requires a shift in perspective. While these conditions often force you to make lifestyle adjustments, this can mean finding new ways to pursue passions or stay connected with loved ones, not cutting these joys out of your entirely. Managing dysautonomia can often come down to a combination of medical treatments, lifestyle changes, and personal adaptations.
Medications can help manage some of the more debilitating symptoms of dysautonomia, such as regulating heart rate or increasing blood pressure. Simple lifestyle changes, like increasing fluid and salt intake, wearing compression garments, and elevating the head of your bed at night, can also make a noticeable difference. If you’re able, exercise can also improve symptoms over time. Many of us start with low-impact activities, such as restorative yoga or recumbent cycling, slowly building up stamina as your symptoms allow.
Awareness and Advocacy
Because dysautonomia remains relatively unknown to much of the general public, raising awareness is crucial. Many people living with one or more of these conditions have faced long, frustrating journeys to diagnosis as a result. With this in mind, advocating for greater awareness and education can improve our own lives while ensuring future patients receive faster, more accurate diagnoses.
Sharing personal stories is one of the most powerful tools for raising awareness. By speaking out about the daily struggles and victories of living with dysautonomia, you help others understand the complexity of these conditions. Social media platforms provide a great space to spread information, while participating in awareness campaigns, such as during Dysautonomia Awareness Month in October, can amplify your message even further.
Living with dysautonomia is hard—physically, mentally, and emotionally. The symptoms are unpredictable, exhausting, and often invisible to others. But understanding the condition and raising awareness can help make life a little easier for those who deal with it every day.
If you or someone you know is living with dysautonomia, share your story in the comments!
