It’s time to prioritize mental health within the conversation about challenges faced by people living with HAE.
Doesn’t it seem like everyone is talking about mental health? As therapy and the pursuit of mental wellness have become mainstream in recent years, there has been an explosion of conversation around social/emotional health, public disclosures of personal struggles and progressive approaches to treatment.
For people living with HAE and their loved ones, the mental and psychological aspects of the disease are a huge component of daily life. The memory of past attacks and vigilance against future attacks is ever-present. The constant burden of managing thoughts and feelings related to HAE – including guilt about how HAE may impact loved ones, stress about school, work or travel, or worries about medication logistics and access, and so much more–are a real part of the HAE experience that can cause significant emotional stress.
We are often told that anxiety and stress can trigger or worsen an HAE attack, but what we don’t often talk about is the feelings of stress and anxiety brought on by experiencing the disease itself. Whether they have HAE or not – many people find it hard to be open about their
innermost thoughts and feelings, but addressing mental health concerns as part of comprehensive care for HAE is an important step to reclaiming control over the disease.
“While we often focus on physical symptoms and treatments, the emotional toll that HAE takes can play a significant role in triggering attacks. By addressing HAE on a psychological and neurological level, we can fight it on more than just the pharmaceutical front, leading to a more holistic approach to managing the condition.” - Person Living with HAE
The first step to knowing whether you might be struggling with mental health is to understand how these stressors show up in everyday life. Below are some examples of how someone with HAE might feel (physically and emotionally) when their mental wellness is being challenged.
Constant worry about having an attack; relentless fear of doing something to cause an attack; persistent concerns about the impact of HAE on your loved ones; these are examples of anxiety. Psychological symptoms of anxiety can include feeling nervous, restless or like you can’t relax; feeling tense or irritable; having trouble concentrating. Physical symptoms might include having a faster or more noticeable heartbeat; sweating; headaches or stomach aches.
The cycle of anxiety and stress due to the burden of managing HAE and anticipating attacks, over time, can lead to depression. For some people, depression may cause a feeling of sadness or emptiness (sometimes called ‘burnout’); irritability; withdrawal from social situations, family and loved ones; feelings of hopelessness (“My life will never be normal”) or helplessness (“I can’t do anything about HAE, so why try?”). Physically, people who are depressed may be exhausted, even after sleeping well; experience unplanned changes in weight or unexplained aches, pains, headaches or stomach problems.
The experience of an HAE attack is always stressful and can be truly terrifying. People who have feared for their life have experienced a traumatic event, and may have recurrent, uncontrollable thoughts about the experience while awake or nightmares when sleeping. This is known as post-traumatic stress disorder (PTSD). Individuals with PTSD may feel on guard or easily startled and may try to avoid situations that could bring back traumatic memories. The onset of an HAE attack may immediately bring up thoughts of past attacks, increasing fear, stress and anxiety – all of which can make the present attack feel worse or last longer.
If you or a loved one is experiencing these symptoms, the good news is that help is available. Tell your doctor about what you’re feeling using specific examples from daily life. Or consult a mental-health specialist; there are medicinal and non-medicinal treatments available to help manage anxiety and depression. A mantra that I’ve personally used to work through stress is known as the five R’s:
Recognize. Refuse. Relax. Reframe. Resume.
1. Recognize the pattern of your behavior or thinking
2. Refuse to let your thoughts send you down a familiar rabbit hole
3. Relax and use tools you have found to be helpful to calm your mind. For example: journaling, time outdoors, breathing exercises, mindfulness, grounding
4. Reframe your perspective by challenging familiar thought patterns; You’ve been here and back before, you can do it again
5. Resume and get back to living
“HAE can be like an unwelcome cloud that follows us everywhere, affecting everyone around us. But thankfully, I am learning to dance in the rain!” - Person living with HAE
Receiving care for both the physical and mental/emotional aspects of HAE is an important step towards overall wellbeing. Be sure to speak with your doctor about any symptoms you may be experiencing. Many people find it helpful to speak with others who have had similar experiences. Consider reaching out to HAEA, a friend or family member or connect with other members of the HAE community via social media or online support groups. By reading this article and sharing or discussing it with a friend or loved one, you are opening the door for others who may be struggling to seek help. Living with HAE can be an isolating experience, but no one need face it alone.
Published with editorial support from Astria Therapeutics
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