What is important for the health and well being of someone with chronic illness?
Connection with nature, culture and identity, and a sense of meaning and purpose are all important to health and well being. Humans thrive on social and community engagement. This is why it is so important for many people with chronic illness to continue where possible with their career. Altruism is also health enhancing. In 1979 psychologists first coined the term called "helpers' high" after a survey found that charity volunteers felt happier. But this isn’t just self perception. Researchers have found that when a person performs an act of kindness or volunteers for a worthwhile cause the brain actually produces dopamine, associated with positive thinking. Secondly, the brain has its own natural versions of morphine and heroin: endogenous opioids, such as endorphins. It is believed that when a person does an act of kindness they feel good on a chemical level thanks to the production of these endogenous opioids. There are also physical benefits that come from the relaxation of your nervous system and your cardiovascular system, but I’ll save that for another time… The saying “by helping others we help ourselves” is true. But it’s not all about helping others. The most important person is you. One of the most important things anyone needs to do when they realise they have a chronic illness is have a good look at their lifestyle. Stress reduction is a must. Get rid of the chaos in your life and the people that either cause it or refuse to acknowledge it. You need people around you that understand your situation, not drag you down. Lifestyle change must start with self-empowerment*. We must take charge of our health and our life. Those that lack self-efficacy* will struggle to achieve this so consider seeking help to overcome it. Above all there needs to be a realistic acceptance of one’s situation and there also needs to be a readiness to change. Life may never be the same again but it isn’t the end of your life. Look at it as a new chapter. What can you do to make this new chapter better in ways the last chapter wasn’t? Nutrition (including keeping well hydrated), keeping active (as much is realistically possible), and good sleep hygiene are also very important. We often think we have a ‘good diet’, but it can easily fall short of the nutritional requirements for physical, mental and emotional health. We know that not getting enough good quality sleep has a negative impact on our health but did you know that prolonged bedrest and sleeping too much is equally as bad for us? Research has shown that the effects of prolonged bedrest due to excessive sleep, an unfortunate necessity for people with rare neurological sleep disorders, idiopathic hypersomnia (IH) and Kleine–Levin syndrome (KLS) and even the excessive sleep itself can be more harmful than not getting enough sleep (read more here). Finding the right balance can be tricky but it is necessary. There is no one size fits all approach to managing chronic illness but there are things we can do that will help us make the most of living with a life altering condition. There are psychologists and counsellors that specialise in helping people build psychological resilience so if you are struggling to make necessary changes or perhaps to identify what needs to be changed speak to your doctor about it. Your situation won’t change unless you do something to make it change. Post updated in August 2023 to include our Top 12 Tips for Living with Idiopathic Hypersomnia - Practical advice for Patients, Carers, and treating Doctors. You can find other resources here. Also Michelle Chadwick's words on acceptance from her presentation at the Idiopathic Hypersomnia & Narcolepsy Education Day can be found here.
*Self-efficacy - the extent or strength of one's belief in one's own ability to succeed in specific situations or accomplish tasks and reach goals. One's sense of self-efficacy can play a major role in how one approaches goals, tasks, and challenges.
*Self-empowerment - is taking control of our own life, setting goals, and making positive choices. Basically it means that we must understand our strengths and weaknesses, and believe in ourselves.