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AnxietyIMG_AnxietyChronicIllness.jpg.d7cd9db9396561f6f9d6ffbcf342f0d1.jpg, similar to dysautonomia, is clouded by stigma and misunderstanding. You may have encountered the female hysteria stereotype at some point, and you may have even experienced judgement due to this label or others like it.

Unfortunately, many people with misunderstood health conditions, such as dysautonomia, are hesitant to openly discuss anxiety because our symptoms are so often dismissed as "all in our head" and we are told we can solve them if we "just relax". Even more, many medical professionals don't understand how to properly test for dysautonomia so their diagnostics often demonstrate normal results, which further confirms their suspicions of us "just being anxious" people. This can create a confusing and vicious cycle for patients.

It is important to note that dysautonomia is NOT caused by anxiety (1), but that anxiety can certainly arise from dealing with the stress of the condition and the misunderstanding that surrounds it. It is also possible for people to have both anxiety AND dysautonomia, and each condition deserves understanding, respect, and proper treatment.

Types of Anxiety

Occasional anxiety during stressful situations is expected. An anxiety condition is when anxiety is persistent, and it may grow worse over time. It could also interfere with daily activity, such as work, self-care, and relationships (2).

1. Generalized anxiety disorder (GAD): Generalized anxiety disorder is characterized by feeling "excessive anxiety or worry, most days for at least six months." (2). Feelings of anxiety can arise around anything, such as work or school situations, close relationships, social settings, health concerns, and even routine tasks. This can cause significant disruptions to one's life. Symptoms may include (2): 

  •        Feeling restless/on-edge
  •        Fatigue
  •        Difficulty concentrating
  •         Irritability
  •         Muscle tension
  •         Sleep difficulties

2. Panic disorder: Panic disorder involves panic attacks, or periods of intense fear, that come on suddenly and peak within minutes. Some panic attacks are triggered by a feared situation, such as heights, while others can occur unexpectedly. Many people try to control panic attacks by avoiding places, situations, or objects that may trigger them. This may have an adverse effect by creating fear of panic attacks themselves. Some symptoms of panic attacks are (2):

  •          Heart palpitations
  •         Sweating
  •         Trembling/shaking
  •         Shortness of breath
  •         Feeling impending doom

 3. Phobia: While it is expected to feel fearful in certain situations, a phobia is when the feelings of fear around an object or situation are far greater than the actual danger posed in those instances (2). Some common phobias include heights, certain animals or insects, tight spaces, and being alone (3). People with phobias may feel (2):

  •        Excessive worry about triggering situations
  •        Avoidance of fear-inducing situations
  •        Immediate and intense anxiety when encountering situations

4. Separation Anxiety: We generally discuss separation anxiety in children, but it can also occur in adults. It is characterized by a fear of being apart from people to whom they are attached. They may worry about their people being harmed when they are separated, have nightmares about being apart, and even experience physical symptoms during separation. This can lead them to avoid separation from their attachment figures (2).

These are a few of the more common types of anxiety, but like many conditions, they are not clear-cut categories. It is always important to discuss your individual symptoms with a professional to get an appropriate diagnosis and support.

 Anxiety and Chronic Illness

Symptoms of anxiety, similar to depression, can be confused with symptoms of chronic illness, especially dysautonomia. Check out our article You're Not Alone: Understanding Depression and Chronic Illness to learn more about depression.

Symptoms of anxiety and dysautonomia can be so strikingly similar that many doctors misdiagnose dysautonomia patients with anxiety because they do not understand the subtle differences between the two. Even people living with dysautonomia and anxiety may have a difficult time understanding the cause of their own symptoms on a day to day basis.

One reason for the confusion is the way that dysautonomia, particularly POTS, is related to dysfunction of the autonomic nervous system (ANS). The sympathetic nervous system (SNS) is the part of the ANS responsible for our fight or flight response or, medically speaking, the release of norepinephrine. Generally, our bodies release norepinephrine in response to stressful situations. However, in POTS, this response can activate without a triggering event, which causes anxiety-like symptoms in the body (4).

These symptoms of dysautonomia, such as tachycardia, chest pain, or near-fainting can, understandably, induce fear and worry further entangling dysautonomia and anxiety. It is normal for these symptoms to trigger stress, especially if they dramatically interfere with your ability to engage in everyday life.

However, many of us can tell stories, especially during our diagnostic processes, of medical professionals who told us our symptoms are “all in our head” and our cure was to "just relax". We could feel dramatic physical changes in our bodies, as if our hearts were about to pound out of our chests. But, we were often dismissed as being dramatic after our doctors assessed our symptoms, heard the concern in our voices (justifiably so!), and viewed a few "normal" test results. This type of invalidation is stress-inducing.

Such dismissals are not only problematic because they deny us understanding and treatment for our dysautonomia, but they also perpetuate shame around anxiety by insinuating mental health conditions that are “all in our heads” deserve less understanding, acknowledgement, and treatment than conditions that may be “all in the body.”

While many, if not most, of us have had eerily similar experiences, it is also important to remember the relief and validation we felt when we did find the amazing physicians who believed our symptoms and guided us toward proper diagnoses.

While dysautonomia is NOT caused by anxiety, it is common to experience anxiety and physical conditions at the same time. Chronic illness and anxiety can create a feedback loop: we may feel anxiety when our physical symptoms are disbelieved or dismissed by professionals and loved ones, especially if they are invisible. In turn, this stress can perpetuate our physical symptoms (5). It can also be difficult to manage symptoms of multiple conditions. One technique is to keep a medical journal to document how you feel (physically and mentally) when your symptoms arise, what you are doing, and any other circumstances.

Management Options

These are a few general management options. You should work with your medical professional to tailor a plan specific to your needs.

1. Medication: Several types of medication can be used to manage the symptoms of anxiety. Medication treatment should ALWAYS be guided by a doctor who should consider all of your health conditions. Benzodiazepines can be helpful for some people, but are also addictive, so short-term use may be considered. Anti-depressants may disrupt the chemical processes that trigger anxiety, but it may take time to find one that works for you. Beta-blockers can help manage the physical symptoms of anxiety, such as tachycardia. You should never start or stop taking any of these medications abruptly or without professional guidance, and you should always talk with your doctor about any side effects (2). Many people, however, may not need medication and prefer other avenues of management to avoid potentially harmful side effects (4).

2. Psychotherapy: Cognitive Behavioral Therapy is a common psychotherapy practice used to manage anxiety. It focuses on identifying the thought patterns that lead to anxiety, and then disrupting those thought patterns. Other forms of psychotherapy, such as exposure therapy may be helpful in some circumstances (2).

3. Support: It is always important to surround yourself with supportive environments where you feel you can discuss your mental health openly, either in-person or online. The DINET Forum is one space where you can virtually connect with other people living with dysautonomia to share difficulties and accomplishments, as well as provide support to fellow members. Often times helping someone else can positively impact your own mental health.

4. Lifestyle Changes: Some people find that lifestyle techniques such as deep breathing, pursuing purpose, developing preventive habits, and creating time to relax and laugh are helpful tools to manage the symptoms of anxiety. While lifestyle changes are often activities you can engage in on your own, you should always discuss them with professionals to ensure they are helpful to your anxiety and to determine if they should be supplemented with other forms of management. 

Just remember that it may take some time to figure out what works for you, and what works is often a combination of approaches that may change as your situation shifts over time. If you or a loved one are experiencing suicidal thoughts contact the National Suicide Prevention Hotline at 1-800-273-8255.

 Lifestyle Techniques

 Here are some ideas of lifestyle techniques that may help support positive mental health.

1. Breathe Deep: Apps like Breathe can help you practice deep breathing, which can minimize anxiety because you 1) focus on one task, and 2) re-oxygenate your body to prevent hyperventilation. There are multiple techniques for deep breathing, but they often involve breathing from your diaphragm (not your chest) and taking slow steady breaths. This technique can be used virtually anytime, anywhere, and it may be especially helpful when you feel intense bouts of anxiety about to arise (4).

2. Pursue Purpose: There are many ways to pursue purpose, but it is important that you find what works for you. Sharing your own experiences and providing a listening ear to others in similar circumstances in a support group can be one way to fulfill purpose. You may also find purpose in your work or family roles. You could even seek out a community organization or an activity group that connects over a common interest. Volunteering can be another way to gain purpose. If you are not able to get out of your home, there many opportunities for volunteering online, including with DINET. All of these activities provide a similar benefit of helping you focus on a loved and meaningful activity, which can disrupt anxious thought patterns (4).

3. Develop Preventive Habits: Preventive habits can include eating well-balanced nutritious meals, appropriate exercise, and strong sleep hygiene. Diet, exercise, and sleep are often difficult for people living with dysautonomia, anxiety, and other chronic conditions, so it may take some time and professional support to figure out the exact habits that work for you. Some people with anxiety find that minimizing excessive sugar and caffeine can help manage their symptoms (4). The type and intensity of exercise that works for you may vary depending on your overall health, but many people find that even light stretching, seated exercise, or a short walk can help with anxiety. To improve sleep, try to go to bed and wake up at the same time everyday. Limit distractions in your bedroom, and ensure it is cool and dark. Sometimes it may be beneficial to discuss your medications with your doctor to determine if they may be disrupting your sleep, or if taking them at a different time of day would be helpful (6).

4. Make Time for Relaxation and Laughter: Laughter and relaxation can be difficult if you live with anxiety, so intentionally scheduling time in your day to pursue them can help manage symptoms. Does a daily meditation practice help you feel more grounded? How do you feel when you call a friend who always makes you laugh (4)?


Article Citations

  1. Postural Orthostatic Tachycardia Syndrome (POTS). (2020). Johns Hopkins. https://www.hopkinsmedicine.org/health/conditions-and-diseases/postural-orthostatic-tachycardia-syndrome-pots
  2. Anxiety Disorders. (2020). National Institute of Mental Health. https://www.nimh.nih.gov/health/topics/anxiety-disorders/index.shtml
  3. Osborn, C.O. (2019 February 27). Common and Unique Fears Explained. Healthline. https://www.healthline.com/health/list-of-phobias
  4. MacDonald, H. (2020, February 20). Mental Health and Chronic Illness. Dysautonomia Information Network (DINET). https://www.dinet.org/info/newsletters/mental-health-and-chronic-illness-r232/
  5. Bates, M. (2014, July 22). Silent Suffering: Anxiety and Chronic Disease. My Good Days. https://www.mygooddays.org/blog/silent-suffering-anxiety-chronic-disease/
  6. Tips for Beating Anxiety to Get a Better Night's Sleep. (2020). Harvard Health Publishing. https://www.health.harvard.edu/mind-and-mood/tips-for-a-better-nights-sleep

 Additional Resources

  1. DINET Forum https://www.dinet.org/
  2. DINET Volunteer Page https://www.dinet.org/get-involved/volunteer/
  3. National Suicide Prevention Lifeline. https://suicidepreventionlifeline.org/
  4. National Institute of Mental Health. https://www.nimh.nih.gov/health/publications/chronic-illness-mental-health/index.shtml
  5. Anxiety and Depression Association of America. https://adaa.org/learn-from-us/from-the-experts/blog-posts/consumer/living-chronic-illness

NOTE:  This article is available in pdf form below.  Printed copies for support or community groups are available by request to webmaster@dinet.org  Please include the purpose, name of group and number of copies requested. 

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