WHEN PEOPLE STOP SEEING YOU AS YOU
By Ayoposi Ojelabi . Published: 01 November 2026
5 min read
There were mornings on the ward when a doctor would walk in, look at my chart, and ask the nurse beside my bed how I was doing, while I lay right there, awake, aware, and fully able to answer for myself.
It happened more than once. Sometimes with doctors. Sometimes with visitors who would ask my wife or a nurse how I was, even while standing close enough for me to hear every word. They simply didn’t turn to ask me directly.
I understood why, most of the time. People were shocked by what they saw. They didn’t know what to say, or weren’t sure what I could still hear, understand, or answer. But understanding it didn’t make it easier to sit inside.
What People See
Sickness has a way of covering up the real identity of a person. What people see is no longer always the person themselves. They see the condition.
I often think about what people actually saw when they looked at me during the different stages of my illness. A man who was bed bound. A man on a ventilator. A man in a wheelchair. A man who needed support for things he had once done without thinking.
These descriptions were all true. They described what my body had become. But they were never the complete description of who I was.
I want people to remember the man who once communicated only through an alphabet chart, one letter at a time. And I want them to remember something else too: that beneath all those visible signs of illness, there was still a man fighting his way through recovery, still trying to find his way back to himself.
The Pity Problem
I resisted pity, not because I believed I was undeserving of sympathy. I knew I was going through something extremely difficult. I resisted it because of what pity was doing to me psychologically.
One care staff member once told me she had cried the first time she saw me. I understood what she meant by it. She was trying to be compassionate, and I don’t doubt that. But I told her, as respectfully as I could, that the tears wouldn’t help my state of mind. I didn’t need to know someone had grieved at the sight of me. I needed positive energy around me, not sorrow.
There were moments when I was already struggling to understand what had happened to my body and what my future might look like. Being looked at primarily as someone to feel sorry for made that weight heavier.
I didn’t want every interaction to remind me of everything I had lost. I wanted to remain a person in the room, not just the patient, the man in the bed, or the man on the ventilator.
Being Spoken About, Not Spoken To
Questions that should have been directed at me were sometimes directed at someone else instead, even when I was right there.
Sometimes because people assumed I couldn’t answer. Sometimes because they weren’t sure. Sometimes, perhaps, because they had unconsciously started associating physical dependence with emotional or intellectual dependence.
It happened socially, and it happened within the medical team too. Questions asked quietly, or directed to whoever was standing beside me rather than to me.
Perhaps it was meant to make things easier. But being spoken to directly when you are seriously ill tells you something important: that you’re still part of the conversation, that your presence still matters, that you are not simply an object being discussed.
Physical Dependence Is Not the Same as Intellectual Dependence
Needing somebody to help move your body does not mean you need somebody to think for you.
Needing help to communicate does not mean you have nothing to say. Needing someone to do something for you does not mean you have no opinion about how it should be done.
Initially, I let some of this happen. There was so much else to survive that simply getting through the day felt like enough.
Eventually, I began to resist it.
I made sure decisions concerning me weren’t made without my input. I wanted to be asked. I wanted my opinion to count.
I didn’t expect to control everything. I understood that other people sometimes had knowledge, experience, or responsibilities I didn’t have. But being dependent did not mean surrendering my voice.
Cared For, Not Controlled
There is a difference between being cared for and being controlled.
Good care doesn’t only keep you alive or make things physically easier. It preserves as much of the person as possible. It leaves room for preferences, disagreement, questions, decisions, dignity, the small things that remind you your life still belongs to you.
This is part of why assistive technology has become so important to me. When a piece of technology lets me do something without waiting for someone else to do it for me, the significance is bigger than the function itself.
It’s a small return of control. A small reminder that although my body may require assistance, I can still influence what happens around me.
That matters, because one of the hardest things about severe illness isn’t only losing physical ability. It’s the risk of slowly losing your sense of yourself.
If enough people treat you as though you’re incapable of deciding things, you can start questioning your own ability to decide them. You begin wondering whether they’re seeing something you can’t, whether dependence really has changed more than your physical abilities, whether this is simply who you are now.
I’ve had to learn that accepting what I cannot physically do, and accepting somebody else’s definition of who I am, are not the same thing.
Illness has changed me.
It has changed what I can do, how I move through the world, and how much I depend on other people.
But change does not mean disappearance.
The person who became bed bound was still a person. The person on the ventilator was still a person. The person in the wheelchair was still a person. The person who needed help was still a person.
Look beyond what someone needs help doing. Look beyond the equipment, the wheelchair, the diagnosis.
There is still someone there who has thoughts, preferences, frustrations, ambitions, fears, humour, and opinions. Someone who may need almost complete physical assistance and still want to decide what happens to their own life.
I don’t need people to pretend my illness hasn’t changed me. It has.
I only want the person I have become to remain visible.
Needing help is not the same as losing yourself. Physical dependence should never become an excuse for making someone disappear.
This essay is Chapter 14 of my book Still Here. If it spoke to you, my newsletter, Letters on Recovery and Identity, brings new writing to your inbox.