31 Days of Dysautonomia Awareness

October is(5)

Today is the last day of Dysautonomia Awareness Month for this year.
Wordpress thinks it is still yesterday, because they aren’t based in New Zealand.  But down here, the sun has been up on the last day of October for some time.  It’s already looking like a beautiful day.

It’s been a really huge month for me.  My first as a Dysautonomia Blogger. I appreciate anew the efforts that health activists go to all over the world to raise awareness and funds for rare diseases.

For any diseases.

And I am really, really tired.

So today I am not doing any big wrap up.  There won’t be blue fireworks and streamers and fanfare. I’m just going to thank you.  For noticing the things I posted, for taking time to discuss it with me, for reading the blog (!) and ‘liking’ all the awareness posts on the facebook page. For those of you who dressed stylishly in blue for Dysautonomia Awareness (Zoe! for instagramming her blue fashions #dysautonomiaawareness), who posted blue pictures for the #dysautonomiaawareness instagram campaign.  For Kylie, who made my hair such a pretty blue and Sarah, who spread the word on the business page of the Salon.  For Michelle, who shared my picture and poem in her blog series “Exploring Dysautonomia through the Arts”.  For Andrea and the editorial folk at Attitude Live, for the opportunity to get the Dysautonomia word out into the media. For all the blue nails around the place (especially, thanks to Zed who went ‘thumbs up for Dysautonomia’ even though in his seven-year-old world, nail polish is “for girls”). For my sister Tristen, who created awareness bracelets with me.  For Anya Bykar and Bea Chuan who donated bespoke jewellery items for the cause. For the girls who heard my plea and donated to the research fund.  Thank you.

Thank you.




Are You Alright in the Head?

Dealing with Dysautonomia

I’ve been seeing someone.  Actually, I’ve been seeing a few people …about my health.  And this month, because it is Dysautonomia Awareness Month, I’m going to do a series of interviews with various practitioners who help me with my Dysautonomia.

Today’s guest is someone who helps me with the aspects of chronic illness that impact my thinking, my mental wellbeing and my mood.


Today I am interviewing Anna Patience, a Health Psychologist with ProCare Psychological Services in Central Auckland.

Dysautonomia patients typically spend a lot of time at medical appointments, addressing various aspects of their illness with specialists across a wide range of disciplines.  Our Western model of medicine compartmentalises our body into different systems, or medical disciplines.  Because the autonomic nervous system employs organs and functions from a range of these groups, we necessarily see many different doctors. It is hard to get them all communicating with each other about what is ultimately, the whole patient.

When you are so busy seeing doctors, it can be easy to overlook a significant aspect of our wellbeing: our mental health. People suffering with a chronic illness face many psychological difficulties. Recently, my GP told me about a free service available to patients enrolled with a ProCare Primary Health Organisation. I am eligible for six sessions with the lovely Anna Patience.  Yes, that really is her name!  And yes, she is patient by name and by nature. Anna has been steering me through some murky waters, illuminating some new ways of looking at things that I had previously felt were drowning me. Giving me strategies and frameworks to understand the processes my mind was going through.  I am so grateful for the opportunity to work with her.

Anna generously agreed to help me share a bit more with you about what she does and some of her thoughts on the psychology of chronic illness.

Me: What is a ‘Health Psychologist’?

Anna: A health psychologist is someone who has been trained to work with individuals (and couples and families) who are having difficulties or challenges with their physical health. This might be due to a recent diagnosis, managing a chronic condition (eg diabetes) or experiencing unexplained physical symptoms. It is normal when someone is experiencing physical symptoms that they might also experience some changes in mood; how they then cope with this can play an important role in the management of their health as well as their quality of life.

Me: What led you to choose health psychology as a career path?

Anna: This was slightly unexpected, as originally I had wanted to be a French teacher! However during my undergraduate studies I took some psychology papers and took up a part time job at a telephone counselling line for 5 to 18 year olds called ‘What’s Up’. This changed my career plan as I found a huge source of purpose and meaning in this work, and was also inspired by those I worked with. I then went on to do post-graduate in health psychology at a masters level and found the holistic element of working as a health psychologist resonated with me. Its also a job that offers a lot of variety, as people can work on the clinical or research side, or both.

Me: What does an appointment with a health psychologist usually involve?

Anna: The setting where I currently work is a brief therapy service, which means most people have 4-6 sessions available to them. Because of this, the first appointment is often focused on what people are most concerned about at this time in their lives. It explores how their physical health condition/situation might be impacting on their ability to engage in the things that are most meaningful to them, for example their close relationships, their work, leisure activities etc. The therapist and client will work together collaboratively to explore the connections between cognitive (thoughts), emotional, physical and behavioural factors and understanding which of these fall into short-term or long-term coping skills. We would also discuss in the first session what the individuals expectations or hopes are for their sessions.

Following this, in subsequent sessions, time is spent both exploring those coping skills, and adding in other strategies that may be useful to the client. This could involve discussing how best to communicate to loved ones/others about their illness and needs, testing out other ways of approaching activities for example pacing behaviours to manage energy output, or being able to step back and ‘unhook’ from thoughts that are unhelpful. Other tools might focus on helping an individual to allow their difficult feelings about their condition, for example feelings of anger, disappointment, fear, shame or sadness. Ultimately interventions are best used when tailored to each individuals needs.

Me: For some patients, seeing a psychologist is something they are reluctant to do.  People can be afraid of being labelled and the perceived knock on effect for their diagnosis and treatment in a medical context.  Many Dysautonomia patients report being initially mis-diagnosed with anxiety, conversion disorder, somatic illness or hypochondriasis (by medical doctors, not psychologists).
Do other doctors have access to information shared in these appointments?  What is the privacy standard in relation to these sessions?

Anna: Everything that is discussed with a psychologist is confidential, unless someone states they may be at harm to themselves or others. At our service the General Practitioners are sent a brief letter after the first and final sessions, with the consent of the client. Psychologists are bound by their ethical obligations to maintain their clients privacy.

Me: What are the most common issues you discuss with your chronically ill patients?

Anna: This would fall broadly under the heading of ‘coping’. What do people tend to say, feel, or do in response to their bodies symptoms, and how might this then impact on physical and emotional well-being? Pain and fatigue are common physical symptoms so this is often a focus. A large part of working with people who’ve had a diagnosis is dealing with the loss of a pre-morbid level of functioning, and helping them process what this is going to mean for them going forward. Adjusting personal expectations, and communicating to others about this is often discussed.

I tend to work primarily from a model of therapy which falls under what they call “third wave” therapies, called Acceptance and Commitment Therapy (ACT). This will often involve clarifying with clients what they want their life to be about in the face of this illness, what do they want to stand for, while also providing them with ways to not let unhelpful thoughts or difficult uncomfortable emotions prevent them from pursuing these valued activities.

Me: Personally, I have found seeing a health psychologist really empowering.  You have given me tools for addressing the parts of my daily experience that are difficult for me.
If you could offer chronically ill patients one ‘takeaway’ idea to think about, what would that be?

Anna: This is a difficult one! I would say thinking about health in a holistic way would be something to consider. This might mean noticing what your mind says about your body and the changes its making or the things it can’t do anymore, letting those thoughts/feelings happen AND continuing to connect to those things that are meaningful for you. Also, using those supports around you, or asking your GP for a referral to a health psychologist if you feel getting an ‘outsiders perspective’ is worthwhile.

Me: What is the one go-to resource that you would recommend for chronically ill patients:
Anna: This is not a resource that is specific to chronic illness, but the two books I use almost daily with my clients and highly recommend are ACT books. They are The Happiness Trap and The Reality Slap, both by Dr Russ Harris.

Me again: If you are suffering from Dysautonomia or another chronic illness and you have been feeling unsure about seeking psychological help,  I would like to encourage you to give it a go. Seeing Anna has made a big difference to my outlook.  Even though things with my body have been getting worse, thanks to her, things with my mind have been getting better.

I hope this interview has helped you.
Do you have questions?  Ask away!