4 things i've learnt from working with people with chronic illness

With the 5 year anniversary of the first lockdown approaching, I've been reflecting on some of the learning from my work as a therapist and coach, working with people living with a range of chronic illness, which include CFS/ME, Long Covid, Post Viral fatigue, Fibromyalgia and other energy limiting conditions.

Millions of people are living with debilitating, long term symptoms. With research, support and understanding still very much in the dark ages, many people continue to feel abandoned, stigmatised and invisible within society, expressing that they feel little hope of a treatment or cure. Chronic illness is complex and affects multiple systems in the body and can be a confusing, painful, confronting experience which has profound and life-changing consequences. It affects people differently but there are common factors which stretch across all experiences. Below are four key lessons that I hope can support keep the conversation alive and in a small way can bring validation, visibility and encouragement to those that it impacts.

Lesson 1: Resilience is a Daily Practice

One of the most inspiring aspects I've found of working with people who live with chronic illness is their level of resilience. It is a huge act of courage to face up to the realities of life with a fluctuating and unpredictable condition that cannot be pushed down, through or imagined away. It takes a tremendous amount of patience and self-awareness to be able continually adjust to prioritise health and rest.

Breaking every day tasks into smaller, manageable steps or scheduling regular rest periods, takes planning and insight. Saying 'no' or 'yes' to things, can feel like setting off on a journey into the unknown. Assessing every activity for it's potential impact on body and mind and being able to pace accordingly, is a skillful practice. Managing setbacks and figuring out how to climb back out of a hole, takes mental and emotional strength. None of this stuff is easy- and remember, there is no universal baseline or yard stick in which to work with. It is an individual process of mindful endurance.

Resilience isn't just a trait—it's an active choice and for people with chronic illness, continually showing up in the face of the unknown, every day, is a quiet and profound quality which should not be underestimated.

Lesson 2: Self-Care is Not Selfish

Many people I work with, led very full and active lives before becoming ill. They have been care givers, the 'doers', the achievers in society or the ones that everyone can rely on to always there for others. Not being able to 'give back' or be present in the same way anymore, can have a profound impact on someone's sense of identity and worth. For some people, self-care is also linked with the idea that you are 'selfish' if you prioritise your health needs. In today's fast-paced world, many of us feel guilty about taking time for ourselves but for people living with a health condition, self-care is not just a luxury, or an add on, it is an absolute essential.

Re-framing self-care in relation to chronic illness can be a challenge but it is one worth tackling. It can have a positive impact on the quality of life and support to smooth the curve through the ebb and flow of symptoms. It is not about striving for perfection and then beating yourself for not achieving it. Self- care is a conscious act, it is about mindful attention to what is necessary to support maintenance of health in a way that is realistic and sustainable. It is about setting healthy boundaries, listening to the body and compassionately turning towards 'what is', when all you want to do is run away or fight. It requires deep acceptance, which might mean making some tough or radical choices. However, we all need to rethink self-care as a way of life. Investing time in our health is crucial, it is not selfish, it equips us with the strength needed to face daily challenges.

Lesson 3: Communication is essential

Talking about chronic illness is hard. Fact. Especially, in the face of in a culture that celebrates productivity.

I wrote a blog post last year to support people with communication and navigating key questions and comments. https://www.therapyandcoachingwithjayne.com/post/6common-phrases-and-questions-to-navigate-when-you-live-with-a-chronic-illness

What I have learnt, is that each person's experience is unique, and finding the right words or actions can be challenging. Fear of burdening others is a common issue, which can lead to a breakdown in communication and connection, with potential sources of support. This is where open and honest communication becomes crucial. I always make it clear in my therapy and coaching practice, that even though I have lived experience, I am not an expert but what I can do, is listen, understand and offer a space for people to be fully honest about their illness, completely free from judgement. From this space, I can then support people towards making the right choices for their individual circumstances. This may not provide a magical cure but it can reduce the feeling of invisibility and isolation and many people reflect that it feels a huge relief to feel heard and understood. I have also learnt in my own journey, that not everyone will understand but being able to speak more honestly, with trusted people re-enforces the need to find those that will truly listen.

Lesson 4: Community Matters

Living with a chronic illness can be lonely and is why building a supportive community is vital. The strength of community support, can help in the face of challenges, setbacks but also successes. Many advocacy groups and local support networks bring people together, offering both face to face and online options. The quality and availability of this provision, unfortunately can vary, depending on location but they can a vital lifeline in the darkest moments but also for emotional maintenance during more stable phases. Although it is incredibly affirming to be around other people who 'get it', community can be found in other spaces that are not specifically found in health related groups. Some people prefer to just 'be' in a space where there are kind and supportive people around that are open-minded and patient. Sometimes you have to take a bit of a risk and try different options to decide what is, and what isn't, a good fit.

Many people I work with, experience very deep feelings in relation to their illness such as anger, guilt, abandonment and fear. Working one to one, enables me to support people to gently turn towards, process and integrate some of these difficult feelings in a compassionate and mindful way. Some people with chronic illness have already experienced alot of loss and trauma earlier in life. Sometimes, working with across longer timeframe, can help someone to understand where some of the original 'seeds' may have been planted long before they became unwell and how these might connect to their experience in 'here and now' of their lives. This, of course is not applicable for everybody, but for some, it can be liberating to unburden a weight, which has been carried for a long time. Therapy and coaching can also help people to consider seeing themselves from a different perspective, in that they have value for who they are, not just what they do. In turn, this can create the confidence to find connection and community in new and different spaces.

Final Thoughts

I really hope that through my work and through my lived experience. I can support the cultivation a more inclusive world that appreciates the diverse journeys of those navigating chronic illnesses. Understanding, compassion, and genuine human connection can help us create a community of support and encouragement. 

I hope you have found this blog post useful, please share or write your thoughts or comments below.

If you are living with chronic illness or energy limiting condition and would like some support to navigate the challenges, I offer 1:1 coaching and therapy both online and face to face.

Book a FREE no obligation introductory call here:

https://calendly.com/growinyourowndirection  or you can email me on growinyourowndirection@gmail.com

Please note: I am a talking therapist with lived experience of chronic illness. I offer insights and reflections via this blog from my own experiences and through reflections on my work with others who live with a varied range chronic conditions. I cannot offer advice or a cure for your condition but what I can offer, is a safe, confidential space for you to feel seen, heard and validated. I will work with you to explore what is right for you and support you to make sense of own unique experience.