In this article, Luella Wheeler, shares from her own experience some shifts in thinking, habits and self-advocacy that have helped to navigate managing chronic health conditions. She has been fortunate to experience a significant improvement in quality of life, so she is hopeful that some of what she has learned is of use to others navigating similar health journeys and all the challenges these bring.
Living with a chronic health condition means experiencing impacts on many, if not every, part of life. These experiences can have unique features for Autistic people because of the ways we sense ourselves and navigate our worlds. Living with a health condition means developing coping strategies. There are a variety of ways people cope with health challenges, with some strategies being associated with better quality of life than others (Kristofferzon et al., 2018; Siegel et al., 2016).
While I personally do find this research insightful and validating of my experiences, I feel a strong sense of resistance that a professional might expect me to simply and suddenly feel better about my situation or symptoms, especially when they have not experienced what I have. In sharing the shifts in thinking and approach that have worked for me in my own context, I am very conscious that you, the reader, may feel a similar resistance. I welcome and encourage you to take what seems helpful and leave what is not. You are the expert in your own life and experiences. I think it is useful to imagine every suggestion or piece of advice being followed by “if that feels right for you”. Kā mihi nui kia koe.
An active coping strategy
Illustration by Róisín Kelly
Below I list some examples of shifts of thinking that I have observed within myself as my ability to actively manage chronic health conditions has improved. It is after-the-fact that I have realised these shift are reflected in research and theoretical models such as quality of life research in chronic disease patients (Megari, 2013) and shifting perspectives in chronic illness (Paterson, 2004). Siegel et al. (2016) describe active coping as “seeking information, problem- solving efforts, deciding to fight” based on the Freiburg questionnaire on coping with illness. Given there are additional barriers to accessing healthcare experienced by Autistic people, it is important to recognise there is an extra layer of difficulty in employing some coping techniques.
Some of the shifts in thinking and approach I describe below happened over years and took a lot of work. While I can see now the limitations of some of my old ways of thinking, I have a lot of compassion for all the reasons why I was like that and what it took to shift my perspective and practice. The “Things that were less helpful” list is not a judgement of my thinking or anyone else’s, but a recognition of what has been limiting for me. I also think it’s important to recognise that so often we are required to be reliant on ourselves because society and its systems are letting us down. In addition, don’t assert that in every case it was a shift in perspective that changed my circumstances. Indeed, in many cases those shifts happened hand-in-hand and it was an improvement in circumstances that shifted my thinking. When navigating chronic health conditions there are natural ups and downs – it is natural and okay to experience ups and downs in perspective and emotional experience too.
What active coping and being well-supported in healthcare looks like for me as an Autistic person
| Things that have helped me | Things that were less helpful |
| Self-compassion | Self-judgement |
| Nurturing all aspects of my self | Ignoring aspects of myself, not acknowledging their significance to wellbeing |
| Understanding and meeting my needs | Trying to meet societal expectations that I had internalised |
| Pragmatism and problem-solving | Waiting to feel better, waiting for ideal circumstances, waiting for rescue from professionals |
| Having good support, both natural supports and support workers | Being unable to accept support and using hyper- independence to avoid showing vulnerability |
| Being proactive and committed to making appointments, attending appointments and being supported to do so in a way that works for me | Not prioritising or having support to access needed care |
| The right next step at the right time | Rigid expectations and “should” thinking |
| Reinvesting back into wellbeing – allocating a portion of my time, energy and resource (including financial, which is not always an option) | Expecting myself to be able to perform constantly in all circumstances |
| A pace of life that works for me, with lots of time for proactive rest and decompression | Living to neuronormative expectations of life and occupation |
| Good nutrition, including supplements (acknowledging these have a financial cost) | Not managing interoception challenges and not eating regularly |
| Pulling back, paying attention, giving myself space | Pushing through, ignoring messages from my body |
| Listening to and responding to my body’s needs with care and regard, building interoceptive perception | Devaluing my body, resenting it and tuning it out |
| Recognising some symptoms as my body’s inherent wisdom and signs of it fighting and working towards wellness | Seeing all symptoms as evidence that something is ‘wrong’ with my body |
| Working with health professionals who listen and collaborate | Wasting time on health professionals who invalidate and dismiss |
| Information from professionals who have insight and understanding | One-size-fits-all standard advice that ignores my reality |
| Seeking support and information from groups of people who share the same challenges (e.g., Facebook groups) | Relying only on professionals and others in my life, who sometimes lacked specific insight and knowledge |
| Small adjustments to habit or routine, one at a time, perhaps starting with one or two times per week | Expecting or enforcing dramatic and rigid changes in habit or routine |
| Using my tendency towards being very habitual as a chance to add care habits | Not doing enough to recognise and disrupt or limit habits that aren’t helping |
| Flexible, deliberately inconsistent, and responsive approach | Rigid, rule-based, inflexible approach |
| Long, slow progress | Quick fixes |
Self-advocacy in healthcare settings
Navigating healthcare well is a big part of managing chronic health conditions. Healthcare environments, systems, and professionals often operate without Autistic people and our needs in mind. I have found the following useful, but different people may need different sets of strategies:
- Building self-advocacy skills with support from a therapist.
- Having people who will advocate for me if I’m unable to – whānau and support workers who are well-informed about my preferences and goals.
- Taking a written list of questions or concerns to appointments – this can be read from or even passed to professionals if speech becomes inaccessible.
- Knowing my rights and expecting them to be met.
- Working with professionals in collaboration and partnership, finding support from those who will work with me. I do better if I am not just a passive recipient of care but am exercising self-determination over my body, my health, and my life.
- I walk away from professionals who won’t listen or don’t believe my experiences, who are not curious and who are not willing to understand and learn.
- I ask a lot of It is within our rights as users of health and disability services to have the information we need in a form we can understand. Asking questions can also be a useful way of steering conversations, and I personally prefer a lot of information.
- I speak up if something is not right. Sometimes in the moment it is hard to process what has happened and say something, so in those cases I will get some support and make contact afterwards to resolve the matter.
- I find it easier to communicate pain by discussing the impact on sleep, mood, daily activities, and by the amount of pain medication I am using. My face, body language and tone of voice don’t convey what I’m feeling and pain scales don’t make sense to me, so historically I’ve had times when my pain level was underestimated greatly.
- Having pre-prepared “about me” documents if needed. One is a very basic note on my phone I can use for brief explanation and self-advocacy if I am in distress. A more detailed document can be created as a Health Passport.
- If I know I will be receiving care in hospital I find out if they will record information about accessibility and communication needs in my patient file so they are available to all practitioners.
- I use online patient portals (such as Manage My Health) as an alternative to using a telephone where possible. For me telephone is less preferred but I know for some Autistic people it is entirely impossible. Some practitioners may also be able to offer email communication.
- Sometimes it is possible to wait in alternative spaces (other than the main waiting room), or to request changes to lighting or any radio or television playing. I usually rely on tinted glasses and ear plugs for more sensory comfort.
- I sometimes wear my sunflower lanyard, but my experience has been that few professionals understand what it means. I know there are initiatives in some parts of the country to make sure clinicians do recognise and respond to these.
While I found solutions as an individual, many of these were based on having the right circumstances and support, and some may be less of an option for some people. Autistic people are diverse, our needs are diverse, and so our strategies must be too. Coping strategies and self-advocacy can serve us well, but it must also be recognised that changes are needed in our public policies, systems and services to ensure everyone is supported in their wellbeing.
Luella Wheeler is a late-identified Autistic adult who has lived through severe chronic illnesses and is currently living well, actively managing health conditions, and passionate about better health outcomes for all Autistic people in Aotearoa.
References
Kristofferzon, M. L., Engström, M., & Nilsson, A. (2018). Coping mediates the relationship between sense of coherence and mental quality of life in patients with chronic illness: a cross-sectional study. Quality of Life Research, 27(7), 1855–1863. https://doi.org/10.1007/s11136-018-1845-0
Megari, K. (2013). Quality of life in chronic disease patients. Health Psychology Research, 1(3), Article e27. https://doi.org/10.4081/hpr.2013.e27
Paterson, B. L. (2001). The shifting perspectives model of chronic illness. Journal of Nursing Scholarship, 33(1), 21–26.
Siegel, S., Milian, M., Kleist, B., Psaras, T., Tsiogka, M., Führer, D., Koltowska- Häggström, M., Honegger, J., Müller, O., Sure, U., Menzel, C., Buchfelder, M., & Kreitschmann-Andermahr, I. (2016). Coping strategies have a strong impact on quality of life, depression, and embitterment in patients with Cushing’s disease. Pituitary, 19(6), 590–600. https://doi.org/10.1007/s11102-016-0750-1