New YouTube Video! Chronic Illness Can Be Lonely: When the Support You Need Isn't There
In this video, I explore an often-overlooked aspect of living with chronic illness: loneliness. And loneliness isn't necessarily about being physically alone. You can be surrounded by family, friends, and healthcare professionals and still feel as though you're carrying much of your illness by yourself. I look at why chronic illness can be difficult for other people to understand, particularly when symptoms fluctuate or aren't visible. Friends and family may genuinely care but still struggle to understand why someone can manage something one day and not the next, or why doing one activity doesn't necessarily mean having the energy to do something else. Comments such as “But you look so well,” or “You managed that yesterday,” may come from a lack of understanding rather than bad intentions, but they can still leave someone feeling misunderstood and alone.
The video also explores the experience of navigating healthcare while living with chronic illness. Having to repeatedly explain yourself, advocate for your needs, or search for answers can be exhausting in itself. Even when no one is intentionally dismissive, healthcare can sometimes become another thing a person has to manage when they are already dealing with pain, fatigue, or other difficult symptoms.
There is also another kind of loneliness that can come from the changes chronic illness can bring to your life. You may have had to reduce your working hours, give up activities you once enjoyed, decline social invitations, or stop making spontaneous plans. Over time, relationships and social connections can change, sometimes without anyone consciously deciding that they should. Alongside these changes, there can be a genuine sense of grief for aspects of life that are no longer possible in the same way.
I also talk about the emotional burden of managing other people's reactions. When you don't want to appear negative, don't want to worry people, or sense that others aren't particularly interested in how difficult things are, it can become easier to say “I'm fine” when you're not. But frustration, sadness, anger, loneliness, and grief can all be understandable responses to living with something difficult for a long time. Being resilient doesn't mean having to be positive all the time.
Finally, I look at what meaningful support can actually look like. Sometimes it's practical help. Sometimes it's having someone who understands that plans may need to change. Sometimes it's simply being able to say “Today is really difficult” without having to make the other person feel better about it. And when support is limited, the answer isn't necessarily to simply tell someone to build a support network. Smaller, more realistic forms of connection and support can matter too.
Living with chronic illness often requires enormous amounts of adjustment. You're managing symptoms, navigating healthcare, adapting your expectations, and sometimes grieving things you've lost, while still trying to continue living your life. If you've been feeling lonely, unsupported, frustrated, or resentful, it may be worth asking whether you're struggling because you're not coping well, or because you're trying to cope with something genuinely difficult without enough support.
You deserve to be supported, not only when things are going well, but especially when they're not.
Watch the video below. 👇
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Dr. Ingela Thuné-Boyle provides specialized online coaching for adults living with chronic illness, chronic pain, persistent physical symptoms, and mind-body syndromes, helping people better understand their symptoms, develop effective self-management skills, and improve their quality of life. She is a Chartered Psychologist and Doctor in Behavioural Medicine with over 25 years of experience in Health Psychology, bringing a strong evidence-based understanding of the psychological, behavioural, and physiological factors that influence health and wellbeing. Learn more about her background [here] and her coaching approach [here].
📩 Contact: For coaching or other enquiries, you can contact her at info@ingelathuneboyle.com.
Please note: Advice given in this blog is not meant to take the place of coaching, therapy or any other professional advice. The opinions and views offered by the author is not intended to treat or diagnose, nor is it intended to replace the treatment and care that you may be receiving from a licensed physician or mental health provider. The author is not responsible for the outcome or results following their information and advice on this blog.
