Wanting to Feel Seen When You’re Chronically Ill -

I have had people talking over me and behind me when I’m in my wheelchair, had to say no to plans with friends because it isn’t accessible. I have even gone out with family, only to realise they didn’t book accessible seats so I couldn’t see at a concert. That deep and aching feeling of not being considered or our needs being met. Wanting to feel seen when you’re chronically ill is something we have all felt, we aren’t alone in this.

A person is seen sitting on a sofa near a window, they are curled up with their head in their hands and they are in low light to represent Wanting to Feel Seen When You’re Chronically Ill — Photo by Annie Spratt on Unsplash

The Experience of Feeling Invisible

I used to be a very different person, I lived alone and had a job I was proud of, I worked hard and had good friends. That all changed when I became chronically ill, it was almost as if the illness made me disappear socially.

People didn’t realise how much my life would change and to be honest neither did I! But people forgetting to consider my limits, my needs, or forgetting me at all are things that unfortunately have continued to happen.

I have for most of it masked so I seemed okay, pretended I wasn’t struggling or was not in pain so I wouldn’t be a burden. But that just made it worse as the grief of wanting to feel seen when you’re chronically ill deepened, invisibility just feeling like an erasure of my needs.

Craving Understanding

The problem is that I longed to be understood without constantly needing to explain, like most of you do. It can be exhausting and overwhelming to constantly advocate for yourself and to try and spread awareness.

Wanting to feel seen is not just about being looked at, it’s the longing to be understood and for our needs to be considered. It is 2026 and yet we still need to explain how offering to lift a wheelchair user into a café is not making it accessible!

But I think the yearning is even deeper than that, it is being used as scapegoats by politicians, and the public assuming most of us are faking. We are the biggest minority, any person, any age or from any culture can become disabled at any time.

Yet, somehow, we have to explain ourselves and it is infuriating! We do not want solutions just recognition that we are human beings and deserve to be supported and included.

Small Moments of Being Seen

But then just when you feel like wanting to be seen when you’re chronically ill is asking too much, small things give you hope.

Maybe, it is a friend checking in and being patient when you cannot reply straight away. Or perhaps it is someone adjusting plans so that you can go along because now it is more accessible.

Being included, even in small ways like someone remembering your needs or researching your illness make big differences. Our mental health is important and it is those small things that can change everything in our small, often lonely worlds.

Social Media as Connection & Visibility

Social media started up around the time that I became disabled, yes, I am that old Hehe!

It is not perfect, nor is it a replacement for real-life friendship or support, but social media is a place where disabled voices can exist openly. We can find community and validation through the shared diagnoses and experiences and our lives can be seen by people who get it!

For me, creating content is a way of reclaiming visibility and raising awareness as well as hopefully showing we are just people. It is also a potential way to make money, as I am unable to work and I can create around my energy and pain levels.

It is empowering, allows me to learn new skills, and make friends from my sofa or in bed, allowing me to be seen even if I rarely leave my home.

How Others Can Help Us Feel Seen

So, how can people help us to feel seen? How can we start a revolution in society if people don’t know how to include us individually?

One way is through practical support, helping to clean, bringing meals we need to only reheat. Adjusting plans and checking access needs are also big helps when making plans and it means we don’t have to think about it when going out is stressful enough.

Wanting to feel seen when you’re chronically ill also means that we have emotional needs and sometimes those can be the hardest. Having people around us to listen to us when we need a friend, or to remember to include us it doesn’t take much to help us to feel seen.

Reframing Worth

It can be so hard in a capitalist world that values productivity, independence and ‘pushing through’ over putting your health first. Chronic illness and disability challenges all of it and pushes people to realise that life is short and we should live it.

We need to see life differently and to realise that our worth is not based on our productivity and the jobs we have. Actually, it shouldn’t be like this for anyone, our lives are meant to be so much more, and people started to realise that during the pandemic.

Feeling seen needs to also come from us and realising that even on the hardest or quietest days, we are still here. We matter, and as soon as we see that for ourselves we can feel our worth without needing it from elsewhere.

Wanting to feel seen when you’re chronically ill, is not easy to achieve, and society will always push back because we change the narrative. But you are here, and so am I, and sometimes that is all that is needed, to not feel alone in the moment. For me, meditation and mindfulness helped me to realise I am part of something bigger, and I hope you see that we are all a thread in the tapestry of the world. We all matter and we are all needed.

Thank you xx

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