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  • Saskia Müller

Chronic Illness and Loneliness

This week is mental health awareness week (15th-21st May), with this year’s theme focusing on loneliness, and it got me thinking.


Loneliness affects so many people of all ages and backgrounds, and since the start of the pandemic, it is no doubt a really prevalent issue in a lot of people’s lives. But what about the loneliness felt by chronically ill/disabled people? For us, this goes way back before Covid and is not just built on a physical entity.


Before I go any further and talk about my own experiences, I want to point out there is a big difference between feeling lonely and being alone. Being alone is celebrated by a lot of people (myself included), especially of the introvert type and is a tool used to refuel and recharge – there is nothing wrong with this whatsoever if it makes you happy. Being lonely however is, because this is what affects your mental health often bringing up feelings of isolation and seclusion, and it is this that I am focusing on today.


When I think back to my own experiences of isolation in relation to my chronic illnesses it tends to fall into three categories:

  • Physical i.e. not seeing people due to being unwell

  • Mental i.e. people not understanding how I feel in regard to symptoms

  • Lifestyle i.e. being different to those around me – work, relationships

If we have said it once we have said it a million times lockdown was a time for ‘healthy’ people to see what it is like from our side of the coin. The results – people struggled with their mental health and needed to get back to ‘normality’ asap. Yet here we are three years later with people still refusing to see lockdown is what the majority of chronically ill disabled people live every single day. With next to no support may I add. Limited to no socialising and little to no opportunities and/or ability to work in the traditional sense. The majority of our days are spent housebound and in some cases bedbound, only being able to see the people we live with if indeed we live with anyone at all. This is the physical loneliness of chronic illness – but what about the mental?


One of the hardest things about living with any form of illness is knowing that most people in your life just don’t get it. They try to be nice, but most of the time it can come across as patronising. ‘Can’t you just push on?’ or maybe ‘If you tried a bit harder’ or my personal favourite ‘you're ill again? What’s wrong with you now?’ – Oh you know just exactly the same thing that has been wrong for the last five years!


It is hard knowing that people don’t get how you feel or understand the daily agony you face. It can make you feel different to those around you and therefore separate from the pack. Ever heard that saying, ‘feeling alone in a crowded room’ – or something along those lines – this is what it feels like to be lonely with an illness/condition. You have all these people around you – family, friends, medical professionals and yet the only person living like you is you.


Because whilst people may sympathise with my symptoms, they are not the ones living with the limitations, I am. I am the one who has to see my family members and friends enjoy life and get houses, get married, and have amazing careers and babies – all whilst I stay in the same spot. Not one person in my real life can relate and that is a very alienating feeling indeed. Quite frankly I feel left behind. Like I am living under some invisibility cloak screaming ‘I’m Here Too’, the only problem is people cannot only not see me, they cannot hear me either as I am on mute. This is no one else’s fault of course these are the cards I have been dealt, but I often feel in the shadows whilst those around me are bathing in the sunshine.


Feeling alone in your thoughts can be an extremely dark place. It can cause havoc with your mental health and lead to feelings of anxiety, low mood and/or depression.


(Important Note – if you are struggling with mental health please contact your doctor or one of the amazing mental health charities available).


So, how can we combat these feelings?

One of the best ways of combating these feelings is to reach out to people who are in the same boat and do understand the rollercoaster you are on. This can be through social media, joining groups, reading blogs or contacting charities.


Whilst this may not be able to take away physical remoteness (unless of course you can go to in-person support groups or join zoom groups etc.) this will definitely help with the mental/emotional isolation.


Of course, not everyone thrives on social media and in fact it can make some people feel lonelier especially when you go under the radar and interactions are limited. Nevertheless, even without direct interaction, I find reading other people's thoughts and comments can still help as it makes me feel connected to others in some capacity who have similar experiences.


I guess the point I am trying to make today is you are not alone. I feel it too, as I am sure so many others do, and it is so important to recognise this.


Loneliness in chronic illness is a very real issue – and it is an important topic to talk about not only this mental health awareness week but beyond.


Do you struggle with the things discussed in this blog post? What helps you?

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