Neve Collins (a.k.a. neveticsalot) is a 20-year-old social media influencer and chronic illness advocate from Stafford. In this personal story, Neve shares her experience of navigating life with complex health conditions, the emotional impact of losing control over her future, and the realities of living with invisible illness. Through her honesty, she highlights the challenges of being believed, the grief of a life changed too soon, and how she has found purpose in advocacy, community, and redefining what a meaningful life looks like.
Living with chronic illness is unpredictable, and I’ve found that one of the hardest parts is that I’ve always been someone who thrives on control. I like to plan ahead, to know what’s coming next, and to feel secure in where my life is going. But chronic illness doesn’t work like that, it takes that control away from you, until you’re left trying to navigate a life that no longer follows a clear path.
For me, it shows up in the small, everyday moments. Cancelling plans at the last minute because I’m too unwell. Not being able to book things in advance- holidays, meals out, even simple things that a lot of people take for granted- because I don’t know how my body will feel when the time comes.
I can’t map out my future in the way most people my age can. Things like further education, getting a job, moving in with my partner, everything feels so uncertain. And that uncertainty is exhausting.
I’ve been dealing with health issues since I was 14. At the time, I never thought it would be long-term. It felt like a temporary setback, something that would eventually pass, so I could get back to “normal life.”
Even as the years have gone on, part of me has held onto that belief. That this is just a phase, and one day it will all go away. I think I found comfort in that idea, if I didn’t believe it was temporary, I would have had to face reality so much sooner.
But when something lasts for years, even if you don’t consciously decide to accept it, part of you begins to understand that life is going to look a bit different.
My official diagnosis is autoimmune encephalitis, a condition where the immune system mistakenly attacks the brain, causing inflammation that can lead to symptoms like memory problems, seizures, confusion, and changes in behaviour.
I also have Postural tachycardia syndrome (PoTS) and cyclical vomiting syndrome. I’m also highly suspected of having gastroparesis, however, I can’t get an official diagnosis yet, as I’m unable to complete the study, which policy says is vital for diagnosis.
In addition, I am tube-fed via an NJ tube (nasal jejunal). I’m also a mobility aid user. I use a wheelchair if I’m having a high symptom day, or going long distances, or crutches for shorter distances.
Chronic illness and the struggle to be believed
One of the biggest misconceptions about being chronically ill is that if you look fine on the outside, then that must mean you are fine. The reality is, many of us live with invisible symptoms- pain, fatigue, nausea, anxiety- and over time, you become very good at masking them. You learn how to push through with a smile, how to appear “okay” even when you’re anything but. So people assume. But you can’t tell how someone feels based on how they look.
One of the hardest parts of my experience hasn’t just been the illness itself, it’s been fighting to be believed. I feel there’s a stigma, especially around young females, that symptoms are exaggerated, or “all in your head.” I’ve been dismissed by medical professionals, made to feel as if I just fixed my mental health, then everything else would go away.
When you hear that enough, you start to question yourself: “Are my symptoms really that bad?”, “Am I overreacting?”. “Is this somehow my fault?”. It becomes a battle, not just to manage your health, but to prove you’re struggling to receive help.
Chronic illness and grieving the life i expected
Chronic illness has changed my life in ways I’m still learning to process. School was one of the clearest examples. I went from being at the top of my class and very intelligent, to struggling to attend any lessons. I fell behind, had to drop subjects to lighten my workload, and even went back a year to try to catch up. I know that if my body had cooperated, I could have achieved so much more academically- and that’s something I’ve had to grieve.
But more than that, grieving the life I always thought I’d have.
Watching people my age in their “prime,” going out, building their futures, living freely and spontaneously. Whilst I’m battling my own body just to do basic things like getting dressed or brushing my teeth.
Lessons learnt from living with a long-term illness
Despite everything, my experiences have really changed me in ways I never expected.
It’s taught me empathy, to listen more. I’m more understanding, and I try to support people in the ways I wish I had been supported. I’ve learnt resilience, but not the type that ignores pain, the kind that keeps going alongside it. I’ve learnt that rest isn’t laziness. That asking for help isn’t a weakness. And that listening to your body is essential, not optional.
I wouldn’t choose this path, but it has shaped me into a more empathetic and compassionate person.
Raising awareness for invisible illness through social media
Social media wasn’t something I started with the intention of advocating. At first, it was just an outlet, an online diary where I could express what I was going through. But when people started messaging me, telling me that my videos helped them feel less alone, or even helped them advocate for themselves and pursue a diagnosis, something shifted.
It gave me a purpose, I started sharing more awareness, education, but also real and vulnerable moments. As well as light-hearted ones too, because my life isn’t just illness, there’s still joy, humour and personality in between the hard days.
Through it, I’ve found a community of people who understand and live similar realities.
Advocacy matters because there are still so many misconceptions. People don’t understand the invisibility and the daily impact it has. By sharing our stories, we challenge those assumptions. Even if it’s small. Even if it’s just helping one person understand.
@neveticsalot #dayinthelifevlog #hiddendisabilities #invisibleillnessawareness #chronicallyill #njtube ♬ original sound – Neveticsalot
Finding worth and support while living with a chronic illness
To those supporting someone with a chronic illness, my main advice is to believe them and validate them. You don’t have to fully understand to be supportive. Just listening means more than you realise.
Chronic illness is part of my life, but it’s not all that I am. There’s so much more to me than my disability, even if that’s what people see first.
So for anyone living with chronic illness, you are worthy of care, understanding and love. You can create a future that may be different, but still meaningful. You are not alone in this.
You can follow Neve Collins on Instagram, TikTok and YouTube.
Do you live with a chronic illness and relate to Neve’s experiences? Let us know in the comments box, on social media or contact us to share your personal story.