Living with chronic illness is a journey that is full of challenges – physical, emotional, social – you name it, it can be a challenge. Among these, loneliness is something that is incredibly common but is also underestimated by a lot of people. Chronic illness fundamentally reshapes your entire life – activities that one brought you joy may no longer be possible due to pain or fatigue, friends and family may struggle to understand your limitations which also leaves you vulnerable to feelings of loneliness.
Social events often require energy and effort that a lot of people with chronic illness are unable to participate in. Spoon theory is a good way to describe the energy limitations that are imposed on someone with a chronic health condition, and often we simply lack the ‘spoons’ needed. This can lead to feelings of isolation as being around friends and family is how we feel connected and is something that people need – we use solitary confinement in prisons as a punishment because it removes that connection that all humans need.
As well as this, when people misunderstand our illness or limits that we have, it can lead to a lack of empathy or patience. It’s understandable that, unless you’ve got a chronic health condition yourself, you can’t fully comprehend what life is like. And as chronic illnesses are so unique and symptoms vary drastically from person to person there can be misunderstanding between individuals with the same condition. It often feels like no one understands what life can be like, and this is a lonely place to be!
Loneliness doesn’t just stem from chronic illness either – it can actually worsen it. Social isolation can exacerbate feelings of depression, anxiety, and hopelessness, which can, in turn, amplify physical symptoms. It can feel like a never-ending cycle that is impossible to break.
But despite the loneliness that you may feel, there are other ways to connect with people. I have found communities online that have allowed me to connect with and speak to other people with chronic illness who understand what life can be like. For me, social media is my connection to the outside world – if I didn’t have access to it then life would feel even more isolating for me. I sometimes take breaks from social media as it can feel overwhelming at times, but I do miss the sense of community and understanding when I am away from those groups.
If you know someone who is living with a chronic illness, remember that your understanding and patience can make all the difference. Reach out, listen without judgement, and offer support in whatever way your loved one needs. Offer to pop round for a cup of tea or to go to drop off some shopping. Ask if they want to chat on the phone or over facetime. Find out if they need help with jobs around the house and offer to go over and help them get some bits done. Whatever is needed at the time – knowing that they have people who love and care about them will undoubtedly make the person struggling with chronic illness feel valued and connected to you!
When I was diagnosed as autistic, I started to read (probably a little obsessively) up on the condition. I wanted to know everything and anything about it, and read about other people’s experiences as well. Here are some of my top books that I have come across!
To the outside world, Emily looks like a typical girl, with a normal family, living an ordinary life. But inside, Emily does not feel typical, and the older she gets, the more she realises that she is different. As she finally discovers when she is 16, Emily is autistic. Girl Unmasked is the extraordinary story of how she got there – and how she very nearly didn’t.
In this simple but powerful memoir, we see how family and friends became her lifeline and how, post-diagnosis, Emily came to understand her authentic self and begin to turn her life around, eventually becoming a mental health nurse with a desire to help others where she herself had once been failed.
Ultimately uplifting, Girl Unmasked is a remarkable insight into what it can be like to be autistic – and shows us that through understanding and embracing difference we can all find ways to thrive.
In 2021 Ellie was diagnosed with autism and ADHD and although it felt like the light had finally been switched on and she wasn’t just ‘broken’, the room before her was messy from a lifetime of being misunderstood. She quickly found that she wasn’t the only one, in fact 80% of autistic females remain undiagnosed at age 18 and only 8% of adults affected by ADHD have a formal diagnosis. Even with a diagnosis, most are left asking, what now?
Ellie’s mission is to change that. To challenge the common misconceptions about neurodivergent conditions that are preventing marginalised people get the diagnosis they need, and to provide simple, actionable resources so that they can live without the fear and shame that she did.
UNMASKED is Ellie’s kind and supportive guide that sheds light on everything from masking to the diagnostic process and from sensory overload to navigating the workplace, so that every reader can better understand themselves and others, and ultimately, make society more inclusive.
Laura James found out that she was autistic as an adult, after she had forged a career for herself, married twice and raised four children. This book tracks the year of Laura’s life after she receives a definitive diagnosis from her doctor, as she learns that ‘different’ doesn’t need to mean ‘less’ and how there is a place for all of us, and it’s never too late to find it.
Laura draws on her professional and personal experiences and reflects on her life in the light of her diagnosis, which for her explains some of her differences; why, as a child, she felt happier spinning in circles than standing still and why she has always found it difficult to work in places with a lot of ambient noise.
Have you, a friend or family member been living with undiagnosed autism?
For every visibly Autistic person you meet, there are countless ‘masked’ people who pass as neurotypical. They don’t fit the stereotypical mould of Autism and are often forced by necessity to mask who they are, spending their entire lives trying to hide their Autistic traits. In particular, there is evidence that Autism remains significantly undiagnosed in women, people of colour, trans and gender non-conforming people, many of whom are only now starting to recognise those traits later in life.
Blending cutting-edge research, personal insights and practical exercises for self-expression, Dr Devon Price examines the phenomenon of ‘masking’, making a passionate argument for radical authenticity and non-conformity. A powerful call for change, Unmasking Autism gifts its readers with the tools to uncover their true selves and build a new society – one where everyone can thrive on their own terms.
The modern world is built for neurotypicals: needless noise, bright flashing lights, small talk, phone calls, unspoken assumptions and unwritten rules – it can be a nightmarish dystopia for the autistic population. In Untypical, Pete Wharmby lays bare the experience of being ‘different’, explaining with wit and warmth just how exhausting it is to fit in to a world not designed for you.
But this book is more than an explanation. After a late diagnosis and a lifetime of ‘masking’, Pete is the perfect interlocutor to explain how our two worlds can meet, and what we can do for the many autistic people in our schools, workplaces and lives. The result: a practical handbook for all of us to make the world a simpler, better place for autistic people to navigate, and a call to arms for anyone who believes in an inclusive society and wants to be part of the solution.
During the first thirty years of her life, comedy script writer Sara Gibbs had been labelled a lot of things – a cry baby, a scaredy cat, a spoiled brat, a weirdo, a show off – but more than anything else, she’d been called a Drama Queen. No one understood her behaviour, her meltdowns or her intense emotions. She felt like everyone else knew a social secret that she hadn’t been let in on; as if life was a party she hadn’t been invited to. Why was everything so damn hard? Little did Sara know that, at the age of thirty, she would be given one more label that would change her life’s trajectory forever. That one day, sitting next to her husband in a clinical psychologist’s office, she would learn that she had never been a drama queen, or a weirdo, or a cry baby, but she had always been autistic.
A summary of my book:
1. I’m diagnosed with autism 20 years after telling a doctor I had it.
2. My terrible Catholic childhood: I hate my parents etc.
3. My friendship with an elderly man who runs the corner shop and is definitely not trying to groom me. I get groomed.
4. Homelessness.
5. Stripping.
6. More stripping but with more nervous breakdowns.
7. I hate everyone at uni and live with a psycho etc.
8. REDACTED as too spicy.
9. After everyone tells me I don’t look autistic, I try to cure my autism and get addicted to Xanax.
10. REDACTED as too embarrassing.
‘Fern’s book, like everything she does, is awesome. Incredibly funny, and so unapologetically frank that I feel genuinely sorry for her lawyers.’ – PHIL WANG
Ellie Middleton is back with a new, practical book to help you work WITH your neurodivergent brain rather than AGAINST it. In each chapter, she writes about the eight executive functions that neurodivergent people struggle with including working memory, prioritisation and emotional regulation and shares 5 simple tips for readers to try out, including:
– Creating a launch pad to remember the essentials when you leave the house – Drawing a car park of ideas to help visualise your thoughts and manage impulse control – The 5, 4, 3, 2, 1 mindfulness technique to prevent spiralling and regulate emotions – Breaking up each day into Four Quadrants to approach every day with more flexibility
This isn’t another journal or planner that claims to organize your entire life because Ellie is the first to admit that she doesn’t have things under control 100% of the time. This also is not a book about how to fit into the neurotypical way of doing things (aka masking). Instead, Ellie reveals why society tells us that we ‘should’ do things (read: patriarchy, ableism, White supremacy) and shows us how we can all free ourselves of those expectations, feel empowered and, ultimately, be more YOU.
Growing up, Chloé Hayden felt like she’d crash-landed on an alien planet where nothing made sense. Eye contact? Small talk? And why are you people so touch-oriented? She moved between 10 schools in 8 years, struggling to become a person she believed society would accept, and was eventually diagnosed with autism and ADHD. When a life-changing group of allies showed her that different did not mean less, she learned to celebrate her true voice and find her happily ever after.
This is a moving, at times funny story of how it feels to be neurodivergent as well as a practical guide, with advice for living with meltdowns and shutdowns, tips for finding supportive communities and much more.
Whether you’re neurodivergent or supporting those who are, Different, Not Less will inspire you to create a more inclusive world where everyone feels like they belong.
Written by two late-diagnosed neurodivergent women and the founders of fast-growing online community @IAmPayingAttention, HOW NOT TO FIT IN is an handbook-meets-rallying cry.
Foregrounding real experiences with autism and ADHD, this book explores the journey of discovering, accepting and flourishing with your neurodivergent brain. It explores why getting diagnosis can be so fraught and gendered, and how to navigate a world which centres neurotypical brains in the realms of relationships, careers, friendships and finances.
By reading this book, you’ll:
Start to understand why so many people are being diagnosed with ADHD and autism right now
Learn the impact that not knowing your own brain can have on your mental health
Find the confidence to ask for accommodations and adjustments at work – without apologising
Have the chance to note down how this journey is evolving for you in chapter-by-chapter workbook sections.
… and, most importantly, get to know yourself and your needs better.
Featuring the latest research and thinking on neurodivergence, contributions from dozens of experts and the real stories of people just like you, this innovative book – which has been written and designed especially for *spicy* brains – is essential reading for anyone whose brain seems to see the world in a different way.
In this ground-breaking debut, Charli Clement combines their own experiences alongside unique short profiles from individuals with chronic illness, to provide an intimate and insightful look at the complexities of living as an autistic and chronically ill person.
From navigating your diagnosis and healthcare, learning how to manage pain and your own sensory needs to dealing with ableism, medical misogyny and transphobia, Clement offers practical advice and delves into the unique challenges faced by individuals living in this intersection.
With a focus on the unique neurodivergent experience and an exploration into disability pride and joy ‘All Tangled Up in Autism and Chronic Illness’ is a necessary and empowering resource for autistic and chronically ill people as well as for family members, friends, and healthcare professionals.
I could go on and on about the books that I’ve read or heard good things about, but for now I’ll leave it at this. Happy reading!
Chronic illness doesn’t just affect you, the person experiencing it – it has a ripple effect that spreads out to family, friends, colleagues. Something that I know a lot of people struggle with is the feelings of guilt that can arise because of this. Guilt can stem from feeling like a burden, missing out on social or work related events, or needing additional help from others. While this is a natural way to feel, it can have a long-lasting impact on mental health and relationships.
There are numerous reasons that you might feel guilty when struggling with chronic illness. Often people describe feeling like a burden as they require more support with things like shopping, cooking, cleaning or even washing yourself. This leads people to feel badly about the amount of time and energy that is being spent on your care. The nature of chronic illness is that they are unpredictable. This can mean that you have to cancel plans last minute and therefore feel like you are letting others down. It can also impact family dynamics and impose limitations on what you can do in terms of work – both of these can cause guilt as you feel like you are disrupting people from living their life or not pulling your weight.
I think it’s important to remind yourself regularly that needing help from others doesn’t mean that you are weak or less valuable. Relationships are mutual and those closest to you want to help you in any way they can. It can help to talk about your feelings of guilt – it may not be obvious to others that you are feeling this way, and talking to them means that they can reassure you that they are happy to help. They say a problem shared is a problem halved, right?
Even if you can’t contribute to things in the same way that you did pre-illness, you can find other ways to show your support, care and appreciation for those around you. Chronic illness is not your fault, and guilt won’t change your circumstances. Think of all the brain space you might free up if you’re not constantly berating yourself for what you can’t do!
Having healthy boundaries can help prevent resentment and allow your relationships to blossom and thrive. Remind yourself frequently that letting other people help isn’t weakness or a sign that you are no longer independent – you can be independent and still ask for help.
Remember this: guilt is a natural response to the challenges of living with chronic illness, but it doesn’t have to define your relationships or self-worth.
Every year, millions of people readily come up with New Year’s resolutions and are filled with anticipation that this might be the year that we eat better, exercise more, complete a project or achieve a life goal. And every year, by February (or let’s be real – by mid-January) planners are discarded, gyms are emptier and diets have gone out the window. Sound familiar? That’s because, for the most part, New Year’s resolutions are a load of crap.
They are built on a false premise – the idea behind New Year’s resolutions is simple: January 1st is some kind of magical reset that will transform you into a better version of yourself. But here’s the truth: change doesn’t care about the date on the calendar. There isn’t anything that special about the first day of the year. Waiting for a specific date to work towards achieving a positive goal or habit is just procrastination wearing a festive hat.
They set you up for failure – most resolutions are vague and unrealistic. They might sound nice, but without a concrete plan or measurable milestones, they’re destined to fail. When you inevitably fall short, you’re left feeling guilty and frustrated – not exactly the motivation you’re wanting, right?!
They’re all or nothing – resolutions are framed as black or white, there is no grey area. Either you’re hitting your daily step goal or calorie ideal or you’re failing. This is a recipe for disaster because life is messy and slip-ups are inevitable. It is not a reason to quit altogether.
They ignore the power of small, steady change – real, lasting change doesn’t happen in giant leaps; it happens in the small, consistent steps. Small wins help you to build momentum and, in turn, motivation. New Year’s resolutions are idealistic and built on the idea of instant transformation.
They’re driven by external pressure – lets be honest: how many resolutions you come up with are things you actually want vs things you think you should want. Unsurprisingly, when you make resolutions that are driven by what you think you should want, they become easy to abandon, and therefore fuel the feelings of guilt and failure.
They are a marketing ploy – New Year’s resolutions are a goldmine for companies looking to sell you something. Gym memberships, subscriptions to diet plans, apps that promise you productivity – they are capitalising on your hopeful (and usually short-lived) commitment to self-improvement. Instead of falling for the hype and buying in to something you don’t really want or need, ask yourself: do I really need this or am I falling for a clever sales pitch?
So, what’s the alternative?
Ditch the pressure-filled annual ritual and focus on a more sustainable approach to change – focus on habits and taking small steps each day, remember that you can start at any time because the best time to start is always now. Be compassionate and gentle with yourself and remind yourself that you can adjust your goals and plans as you need to. And, finally, make sure that your goals align with your values – you’re much more likely to keep motivated to achieve your goals if they fit who you are as a person!
The bottom line is this: you don’t need an arbitrary date or big resolution to grow or succeed. Real change happens gradually and consistently. I hope that the next year is the year where you learn to focus on building a life that feels good no matter what day of the year it is.
Mending the Broken 