Occupational Therapy for Chronic Illness

5 Oct

By Emma Diepenhorst, Elevation Women’s Health

It’s more than work! How Occupational Therapy can help you achieve your goals.

I have a dream that all people, whether they have a health condition such as endo, adeno, PCOS, pelvic pain, infertility or are having a baby - can access an Occupational Therapist as part of routine care. Why? Because occupation is not all about employment. Originally, the word occupation meant all the things we do to occupy our time. It’s only the more modern use of the word that has come to be primarily associated with paid employment. Fundamentally, the role of an Occupational Therapist is to enable people to do all the occupations (aka activities) they need and want to do. When you have a health condition, your ability to participate in valued occupations can be a challenge. That’s where Occupational Therapy comes in. To enable our clients to live the life they want, we use a range of strategies to help. Below are some of the common approaches used to tackle conditions such as endo, adeno, PCOS, pelvic pain and infertility. These all have the end goal of increasing independence and participation in occupations – be it playing sport, cooking, paid employment, going to brunch, intimacy, looking after you child – whatever your own goals are.

Sleep

Sleep has a huge impact on both our physical and mental health. When you have a condition that causes pain, it’s often hard to fall asleep and stay asleep. This can also occur for people who are impacted by infertility, due to increased anxiety. An Occupational Therapist can help you learn what specific actions you can take to fall asleep faster, have better quality sleep and an action plan of what you can do when pain or worry wakes you up in the night – hint – scrolling on your phone is definitely not a recommended strategy. A thorough assessment of your sleep habits can identify specific changes you can make to areas of your life such as your diet, your environment and your routines in order to get the best sleep possible.

Habit Formation

Having a health condition like PCOS, infertility or any form of pelvic pain requires a proactive approach to symptom management or maximising a healthy lifestyle. Habits such as healthy eating, exercising, relaxation, managing medications, or completing specific exercises or stretches can be hard to establish when you are battling symptoms. The role of an Occupational Therapist is to look at how you already have your day structured and help you work out how you can build in new, helpful habits in ways that will require less willpower, less remembering and be sustainable for your own unique circumstances, not just for the now but hopefully life-long. One of my favourite habit-forming tricks is habit stacking, where you build on existing, well ingrained habits like brushing your teeth or boiling the kettle, to support the formation of new habits.

Structuring time and tasks to manage symptoms

When studying Occupational Therapy, I never would have imagined that I’d be using the skills and knowledge I leaned to help manage the side effects of fertility medication for PCOS. Fatigue, brain fog and nausea were my monthly shadows in my high paced, physically demanding hospital rehabilitation role. Luckily, Occupational Therapists know about pacing, prioritising and analysing task demands so I could structure my day as best I could to function at work and manage my symptoms. Many clients I work with, are what I call ‘doers’. They like to achieve at a high level, tick off all the items on their to do list and will often try and push through symptoms despite significant pain or fatigue. This ‘pushing through’ can increase symptoms in some conditions, so it’s helpful to have advice from an Occupational Therapist on concepts like pacing (breaking tasks up), task simplification and how to realistically incorporate this into your day when you have things you really do need to get done.

Mental Health

When you have a health condition, especially something like infertility, PCOS, endometriosis or adenomyosis, it’s vital to foster your mental health. This form of self care is easier said than done. Many clients I see says things like – “I feel like it’s all in my head” or “this is my fault”. Having these conditions is tough enough, but the challenging road to diagnosis can lead many women feeling devalued and even undeserving of taking time to care for themselves. Having a clinician that can appreciate the road you have been on is vital. It’s also vital to have someone on your support team who you can work with to develop mental health strategies that work for you – it’s definitely not a one size fits all approach. Similar to a psychologist, an Occupational Therapist may help you learn specific breathing techniques, mindfulness meditation or an approach like CBT or ACT, but an effective Occupational Therapist will also help you to learn ways to incorporate the occupations you already love into your mental health toolkit. This makes taking care of your mental health part of a fulfilling day; and potentially even fun.

Enabling participation

One of the most important things an Occupational Therapist can support you with is finding the ways you can do the things you need or want to do – despite your symptoms or limitations. This could be by suggesting something simple like completing an occupation in a different posture, setting up your environment differently (eg moving a few things around in the kitchen so cooking isn’t so laborious) or recommending a piece of equipment to use on the days you have a pain flare-up. Sometimes, it’s a really creative solution that neither you or I saw coming but discovered through trial and error. Occupational Therapists see participation in meaningful occupations as a central part of health and wellbeing so we’ll often go to great lengths to find a way for a client to do something they love despite their limitations.

Environmental Optimisation

Our physical, social and digital environments play an enormous role on our wellbeing. By analysing what’s in your environment, an Occupational Therapist can make suggestions as to what features are contributing to your physical and mental wellbeing and what elements of your environment are likely to be making your symptoms worse. I like to complete an audit of client’s environments once I have a clear understanding of what their sensory preferences are. Through questioning clients about the types of things they find both calming and stressful, they often begin to develop an understanding of what their unique needs are and are able to continue to make sure their environment is supportive well into the future. Examples of common changes clients make to their environment after discovering what their needs are include changing their lighting, changing furniture heights (some people with pelvic pain find getting off a very low chair can exacerbate their pain), increasing contact with a particular friend who is a positive influence on them, or deleting social media accounts that are detrimental to their mental health. One of the things I love about telehealth or in-home consultations, is that I see the physical environment of my clients. There’s nothing quite like a trained eye to pick on the unhelpful environmental features that you don’t notice if you’re in an environment all the time!

Pain Management

All of the above interventions can help with managing pain – better sleep, pacing, healthy lifestyle, looking after our mental health and being supported to still do the things we love. Pain is complex and is influenced by lots of aspects of our lives, not just what’s happening at the site of the pain. Part of an Occupational Therapists role in pain management, is to help clients better understand how pain works (hint it’s actually pretty complex and involves lots of different areas of our body). We know from the research, that when clients understand how pain works, they are better able to manage their symptoms. Additionally, an Occupational Therapist who has skills in pain management may also use a range of other interventions such as graded motor imagery, safe and graded return to occupations using principals of ergonomics and body mechanics, sensory modulation to help regulate alertness or biofeedback. There is no one size fits all approach when it comes to pain management, especially pain located in the pelvic region so interventions may vary widely between people.

Goal setting

Goals can form an integral part of driving the direction of therapy. But for goals to be helpful, they need to be the client’s own goals. Sometimes it’s hard to articulate a future when you are navigating pain or stress on a daily basis. The role of an Occupational Therapist is to help you connect with your values and what you love to do, so you can decide what goals will be meaningful to you. When you have infertility and are trying to conceive, it can be tempting to put all other areas of your life on hold. But it’s helpful to have a range of goals in other areas in your life that don’t relate to pregnancy. This helps foster your mental health and can reduce the impact of infertility creeping into all areas of your life and becoming all consuming.

If you would like to find an Occupational Therapist

Unfortunately, not all public funded health services have an Occupational Therapist as a part of their pain management, fertility or women’s health team. If you would like to access an Occupational Therapist privately, you can find one using Occupational Therapy Australia website “Find an OT” section. You can then search by location or area of interest. There is currently no area of interest category for women’s health, but there is one for pain management. You can also speak with your GP about whether you can access Medicare funding for Occupational Therapy for your specific health condition. And, of course, you can always contact me. If I can’t help you I will help you find an OT that can.

About the Author

Emma Diepenhorst is an Occupational Therapist and founder of Elevation Women’s Health. She loves using her unique skills in Occupational Therapy to help women live happy, healthy and meaningful lives. She is passionate about supporting women with infertility, women’s health conditions, and women in the perinatal period. Emma holds a Masters in Occupational Therapy Studies, a Postgraduate Diploma in Psychology and a Bachelor of Science (Psychology). She lives in Melbourne but has developed innovative telehealth techniques to enable her to support women Australia wide. Emma can be found at www.elevationwomenshealth.com.au and on Instagram at https://www.instagram.com/elevation_womens_health/

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