Make a difference – partnering for progress – Real-lives, real challenges: What makes a difference in mental health?
Acknowledging that mental health is a hugely important issue for the HAE community, HAEi’s Fiona Wardman introduced a session to address the many requests for more information on the topic: a dedicated discussion to guide individuals and Member Organization (MO) leaders.
The panel consisted of Cecilia Ramirez, an HAE patient and emotional impact coach; Natasa Angjeleska, an HAEi RPA and also a caregiver, educator, and researcher; and Professor Anete Grumach, an HAE expert physician from Brazil.
Turning first to Cecilia, Fiona asked her about the emotional impact of HAE on her. Cecilia said that she lived with HAE for 20 years before receiving a diagnosis, suffering life-threatening throat swellings and even giving birth to her baby during an attack. As a result, the emotional burden for her was very severe. Eventually, she came to accept that she needed to do something to prioritize her emotional wellbeing. She focused on her self-esteem, choosing not to cry and complain but to reach out to her MO and put in the work to build her mental resilience.
‘We should accept ourselves with all our light and shade.’
– Cecilia Ramirez, HAE patient, Argentina
Fiona asked Cecilia to expand on what made a difference for her. She referenced the work of a psychologist called Mark Brackett from Yale University, who developed an approach to emotional learning called RULER. She outlined that this stands for:
- Recognizing your emotions
- Understanding them
- Labeling them
- Expressing them
- Regulating them
She advised people to be aware that sometimes empathy can be overwhelming, particularly for parents of children with HAE.
She suggested that a powerful tool for managing emotions can be working on social skills. The three most important things she felt for people living with HAE are:
- Assertive communication, which can be especially important in dealing with the bureaucracy of a disease like HAE
- Conflict resolution as attacks come and go, but what happens in between makes a real difference
- Teamwork, partnering with other patients, carers, and doctors, can ensure there is a network that understands and supports you
Fiona asked Natasa to comment on the stigma and misunderstandings that surround HAE. Her experience was that stigma is a real problem. Even within families, people might prefer to ignore or deny the condition, or struggle to explain it to children. There is shame and self-blame because the condition can be passed to offspring, and children may blame their parents. She also felt that those with HAE may try to pretend that nothing is wrong, but it can be hard to account for lost school or work days. She suggested that the stigma extends to concerns that HAE is infectious, and that all of this burden can lead to social withdrawal and isolation as people with HAE and their families are profoundly affected by the misapprehensions of society.
For Natasa, ways to reduce stigma and promote wellbeing start with prioritizing self-care. For caregivers, this means recognizing that the burden of looking after someone with HAE is huge. Agreeing with Cecilia, Natasa emphasized the power of a peer support network for both patients and caregivers, with evidence suggesting that peer support groups offer real benefits to people affected by trauma. Her advice was for people to connect with those who understand what they’re going through and can openly discuss things with them. Natasa’s own personal experience is that her son’s perspective has improved after joining an HAE youngsters’ community, as he feels less alone and more accepted.
Natasa suggested that MOs might consider offering:
- In-person or virtual meetings to allow patients and caregivers to share experiences
- Workshops to discuss coping strategies, with a psychologist to moderate
- The opportunity for people to write and share their own story, as it can help people remember that they are more than just an HAE patient or caregiver
Fiona asked whether doctors underestimate the impact of HAE? Natasa felt that it was important not to lose sight of mental health and wellbeing when thinking about the management of HAE. Anxiety and depression are real issues, and stress is even a trigger for HAE attacks in some people. Natasa felt that it was impossible to properly manage HAE without thinking of both the physical and mental side.
From her own practice and experience, Prof Grumach’s perspective was that every time a healthcare professional interacts with a patient, they should ask not only about physical symptoms but also how the patient feels. Paying attention to emotional support is critical to managing any chronic disease. The biggest thing healthcare professionals can do is foster the exchange of experiences among people with HAE, according to Prof Grumach. If a patient no longer feels that she is the only one in the world, it can be a potent lift to their mental well-being.
Cecilia returned to the theme of self-esteem in response to Fiona’s question about what makes a difference to people’s emotional well-being. She suggests that people pay attention to five ‘senses’ when thinking about their self-esteem:
- Sense of identity – Know who you are beyond HAE
- Sense of belonging – Build your support network of peers, associations, and doctors
- Sense of security – Have a feeling that you will be safe, through medication or planning, such as knowing HAE clinics nearby before traveling on holiday
- Sense of competence – Believe in your ability to achieve your goals
- Sense of purpose – Have pride in your goals and your achievements
‘Know that you are not alone. You have friends through the HAE community we have built. Being a member of this community helps you grow.’
– Natasa Angjeleska, HAEi RPA
Fiona suggested that, conversely, her experience with HAE has helped her deal with things in life better. Cecilia said her HAE has taught her never to take no for an answer. Natasa’s final remark was that, in HAE, the swelling may be visible, but we should not ignore the emotional and mental aspects of the condition. We can treat both.
