Acromegaly Support Conference 2019: A Patient’s Learning Experience

Heather Elder (left) and Dianne Sauvé (right)

Hello acromegaly friends and families,

We have lots to share with Ottawa Acromegaly Awareness and Support Network.

President Dianne Sauvé and myself (Heather Elder, VP) recently attended the 2019 International Acromegaly Conference, held March 20-22 in New Orleans.

This incredible event allowed us to meet over 200 individuals connected to the acromegaly community—patients from around the world, supportive family and friends, medical professionals, and pharmaceutical representatives.

The conference focus was patients and physicians working together for improved healthcare for acromegaly patients. Each session offered excellent insights and advice.

With so many ideas and conversations to share, we’d like to explore some key takeaways in a series of posts. First up: strategies for coping with acromegaly, from diagnosis to daily life.

Catherine Jonas, a licensed marriage and family therapist with a speciality in working with those who have (or whose loved one has) a chronic illness, spoke about “My Role in Coping with Acromegaly”.

The following are some important points she made:

  1. You are not your diagnosis.
  2. There are physiological and psychological aspects of the disease.
  3. How well you learn to cope will affect your well being.
  4. It’s important to learn about who you are and how you want to live your life.

With the diagnosis of a rare disease, patients face many psychological challenges: your personal security is disrupted, you wonder how to incorporate this new information into your life, you deal with the persistence of symptoms, and you try to balance treatments with lifestyle needs. Trying to process all this while also being in pain, tired, and foggy-headed can be overwhelming. Plus, the hormonal impact of acromegaly adds an extra dimension to cope with.

Catherine elaborated on how a therapist can play a role in dealing with all the above. Patients and those in their support networks often find having an impartial professional to talk to, whether individually or as a pair/group, can help reduce stress and provide some healthy ways to cope.

With all the changes and stresses brought on by an illness and diagnosis, depression is not uncommon. Catherine stressed the importance of checking in with your mental health on a regular basis (this applies to patients and their caregivers). Some key questions to ask include:

  • Have I changed?
  • Am I isolating myself from family and friends?
  • Am I losing interest in things that used to give me pleasure?

She added that you may feel grief and loss at any stage of the acromegaly journey. It’s important to look at how you cope with these feelings. There are specific behavioural and psychological efforts that people use to master, tolerate, reduce, or minimize stressful events.

The following are some common coping styles (note that the same person could use any or all of these at some point of their journey):

  1. Fighting spirit: You see your illness as a challenge; you have a positive attitude and an active role in recovery; you believe you can exert some kind of control.
  2. Avoidance and denial: You ignore the diagnosis and Denial can be useful as it gives time to process information, but it can also be negative and lead to unhealthy consumption, like drugs and alcohol.
  3. Fatalism: You have a who-cares, let-it-be attitude.
  4. Helplessness and hopelessness: You feel a loss of control; you are overwhelmed and feel like there is nothing you can do, so what is the point. It’s important to avoid self-pity.
  5. Anxious preoccupation: You compulsively search for reassurance; much time is spent worrying and thinking “what if…?”.

A therapist can help you navigate your coping style and find which healthy strategies work for you. Some exercises to explore include mindfulness, visualization, relaxation, and deep breathing.

Catherine also discussed how a therapist can guide you through learning to change our automatic thoughts, which tend to be negative in nature. These initial reactions, such as assuming an unexpected call from your doctor must mean bad news, are not based on fact. By being aware of our thoughts and practicing techniques to make new thoughts grow, we can replace negative first response thoughts with positive thoughts. This can help keep stress under control.

Finally, she emphasized the importance of self-care: resting, playing, eating well, and exercising. And, joining a support group can be very powerful. It is so important to be heard and understood and to connect with others. A support group (such as ours!) can encourage and nurture socialization and prevent isolation while helping you find solutions to common problems.

Heather Elder

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