With HAE, minding your mental and emotional well-being requires self-care

I was recently asked how hereditary angioedema (HAE) affects me mentally and emotionally. That’s a big question!

HAE affects everything that contributes to my mental health — my family, my work and social relationships, my physical health and illnesses (both chronic and acute), stress, diet, exercise, rest, and my spiritual life. Living with angioedema can also affect my sleep, my focus, and my ability to relax, especially if I’m concerned about a potential attack.

Before I was diagnosed with HAE, I felt like I had little control over my body, my mental health, and my overall well-being. It was as if I was just winging it, dependent on what each day brought. There was very little consistency in what to expect from my body or how it would react to events. Having a diagnosis explained years of seemingly random symptoms, pain, and confusion, and I felt validated and relieved at finally feeling seen, heard, and no longer dismissed.

But managing stress and protecting my mental health are still not easy. Family crises, illness or injury, social and world events, not having enough time for rest and recovery, limited access to support resources, financial burdens, and, most of all, lack of understanding can tax my best efforts.

I often don’t think my extended family, friends, co-workers, or others understand the impact that HAE has on me, even as I need more support from them to help me manage these effects. This creates stress, which can trigger an exacerbation. And stress can happen in both good and bad events — in the joy and excitement of a celebration or from the negativity and hard feelings of an argument. Knowing when to share or disclose my health concerns is a difficult balancing act.

So what do I do about the effects of HAE on my emotional well-being?

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Self-care and well-being

Since my diagnosis, and since I’ve begun treatment and come to understand what triggers my HAE, I’ve learned to focus on self-care.

​I define self-care as things I do for myself that have a positive impact. Self-care can strongly influence my mental health and reduce or counteract stress. It doesn’t come easily. Having been a caregiver for my children and, over the past 10-plus years, for my chronically ill daughter, I find it much easier to care for others than myself.

But I am learning to use the airline oxygen mask theory with respect to caregiving: “You have to take care of yourself, before you can effectively help others.” Much easier said than done!

I also work to better assess my present state of mind and well-being. I ask myself, what is my level of stress or relaxation? Is my mood positive, negative, or shifting, and why? How is my self-esteem? Do I feel confident and in control? How’s my concentration, thinking, and decision-making? What is my level of interest, and do I have joy in my life?

The answers to these questions will be specific to each person, and the solutions will be, too. They could include activities such as meditation or spiritual pursuits, journaling, music, art, exploring nature, travel, community involvement, or a form of guided therapy. I believe our mental, spiritual, intellectual, social, and physical well-being are interconnected, and self-care can support them all.

It’s been a long journey for me to come to this realization. I hope you, too, are on that path of self-care and will seek out your own joy, peace, balance, and support in your personal health and well-being. I feel so grateful to have discovered Bionews, the publisher of this site, early in my journey. I have found invaluable information about my rare disease and discovered an incredibly supportive community. I wish you many blessings on your path of well-being and living your best life.

Note: 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. The opinions expressed in this column are not those of Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.