Mind-body wellness: Nurturing your mental health with HAE
Last updated May 30, 2025, by Susie Strachan
Fact-checked by Joana Carvalho, PhD
Hereditary angioedema (HAE) can take a toll on your mental health, whether you’re living with the condition or caring for someone who is.
The unpredictable nature of HAE symptoms may cause you to feel constantly on edge, anxious about what might trigger the next flare, or emotionally drained from holding it together for someone you love.
That’s why your mental health deserves just as much attention as managing swelling episodes and other HAE symptoms.
Therapy, lifestyle changes, and HAE support groups may help alleviate anxiety or depression, reduce stress, and protect your emotional well-being.
Mental health challenges of living with HAE
Living with HAE can have an impact on your emotional well-being, especially when you’re trying to stay one step ahead of a condition that doesn’t follow a schedule.
The fear of an attack striking at the wrong moment — especially in public — can heighten anxiety. Visible swelling may make you self-conscious, particularly if people around you don’t understand what you’re dealing with.
For many, getting a diagnosis also wasn’t quick or easy. If your or your child’s symptoms were misunderstood or dismissed in the past, that experience can leave behind lasting emotional stress.
When emotional well-being is affected, the signs aren’t always easy to spot. You or your child might notice:
- feeling more irritable, sad, or hopeless
- appetite changes, such as eating too much or too little
- loss of interest in hobbies or activities that used to be fun
- changes in sleep, such as oversleeping or struggling to sleep at all
- more frequent or harder-to-manage HAE attacks, possibly linked to stress, a common HAE trigger.
Strategies to support mental health
You may not be able to control when a flare-up happens. Still, there are management strategies to help protect your mental space. These may involve practicing self-care and mindfulness, staying on track with your HAE medications, joining a support group, and talking to a therapist.
Make time for self-care
Self-care for mental health with a rare disease like HAE might include physical activity, pursuing creative outlets, journaling, and making dietary changes.
- Certain kinds of physical activity — including low-impact exercises, such as gentle walking, water aerobics, stationary cycling, and yoga — can help alleviate stress without putting strain on your body.
- Creative outlets like drawing, painting, or playing music can help you express thoughts that are hard to put into words.
- Writing in a journal about your moods and symptoms can help you recognize HAE trigger patterns, express frustration, or recognize moments of progress.
- Following a diet that helps you feel your best may reduce physical discomfort, as some people find that specific foods can trigger or worsen HAE symptoms.
Use mindfulness techniques
Practicing mindfulness can be helpful amid the early signs of an attack and during the attack itself. Tuning in to your breath or using calming techniques may help you feel more in control.
A personal wellness toolkit of items and activities that bring you back to the present moment can also help you feel safe and comforted.
- For adults, that might include a favorite music playlist, a weighted blanket, squeezing a stress ball, or using a calming app.
- For children, following a familiar bedtime routine, hugging a favorite stuffed animal, or hearing a comforting story may offer a sense of security.
- For teens, listening to calming music or spending time with a pet or a close friend may help reduce stress.
Stay consistent with treatment
Sticking with your HAE medications and being prepared for flare-ups may help ease anxiety. If you’re on a prophylactic treatment to help prevent attacks, staying on schedule can reduce the worry of being caught off guard.
Having a plan in place for treating an HAE attack might include bringing your on-demand medications when you go out, and teaching others what to do in an emergency, such as difficulty breathing caused by neck and throat swelling.
If you’re a parent, a helpful plan might include sharing written instructions and authorization with your child’s school or caregivers for administering treatment or seeking emergency care.
Connect with others
Talking about HAE with others, and perhaps discussing how it affects your life or your child’s, can help take some of the emotional weight off your shoulders.
If you’re unsure where to start, HAE support groups can offer a place where people understand what you’re going through, because they also live it. These groups can provide comfort, encouragement, and practical tips.
Talk to a mental health professional
If you find that anxiety or stress is interfering with your daily life, it may be time to consider therapy or counseling.
A mental health counselor who understands a chronic illness such as HAE can offer a safe space to talk things through and help you in finding and using cognitive behavior therapy and mindfulness tools that work for you.
Virtual therapy can be an option if mobility or distance makes it hard to get to an office. Sessions by phone or video offer more flexibility and may aid with privacy while still giving you the support you need.
Remember, you don’t have to navigate HAE alone. Whether you’re living with the condition or supporting someone who is, taking care of your mental health and reducing stress is just as important as managing the physical symptoms of HAE.
With the right tools and connections, you can find ways for better coping with HAE and feeling more in control.
Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This 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 health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
