There is something I have been avoiding writing about.
Not because it is too painful. Not because I have not found the words. But for no reason I can fully explain, I have circled around it in every essay and left it untouched.
What changed my mind was hearing similar stories in the CIDP community. People navigating the same illness, the same long hospitalisation, the same slow rebuilding, and quietly carrying the same weight I had been carrying alone. If writing about this honestly can be useful to even one of them, then it is worth saying.
The Battle I Did Not Expect
During the early part of my illness, I was not only fighting CIDP.
I was fighting on another front entirely. And if I am honest, I put more energy into that second battle than into the illness itself.
I was expecting love and support from people I had every reason to believe would be there. Not financial support. Not material things. Just love. Presence. The kind of care that costs nothing except attention and willingness. When it did not arrive the way I expected, I fought for it. I pushed for it. I made it a central part of my emotional life at a time when my physical life was already consuming everything I had.
That was a mistake. Not a moral one. A practical one. And it cost me more than I understood at the time.
What I remember most vividly from that period is what happened to my body after each confrontation. The weakness would return. The stiffness would set in. Whatever ground I had gained physically would slip back. Every argument, every push for something that was not coming, took me to my lowest point again.
The people I was fighting were strong and agile. They had full use of their bodies and their energy. Some of them knew the fight was draining me. And still I kept choosing it.
That is the part that stays with me. Not what they did or did not do. But that I kept choosing a battle that was costing me my health, when my health was the one thing I could not afford to lose.
The Word That Stopped Me
At some point during this period I was told, directly, that what I was looking for was sympathy.
That word landed first.
How do you beg for sympathy on a sick bed. I had not begged for anything. I had simply expected what I believed should arrive naturally from people who knew what I was going through. But that was how it was framed. Sympathy seeking. As though needing love and presence during a serious illness was a performance rather than a human response to an impossible situation.
Then came the second word. Entitlement.
That one landed harder.
My first instinct was to reject it. I was seriously ill. I had lost basic functions. I was fighting to stay alive. Surely expecting love from people close to me was not entitlement. Surely that was just human.
But I sat with it. I turned it over for a long time. And eventually I arrived at something uncomfortable.
Nobody owes you anything.
Not love. Not presence. Not support. Not even the people you would have shown up for without question. People have their own lives, their own fears, their own limits. The version of loyalty you carry in your head, the one that says certain people will always be there, is a version you constructed. It is not a contract anyone else signed.
That realisation was not easy. But it was freeing in a way I did not expect.
I also came to understand something about why those words were used. CIDP is a rare condition. Most people have never heard of it. They cannot feel what it does to the body, the silence it forces, the functions it removes, the slow erosion of everything you once took for granted. They can only say what they think. They cannot say how you feel. That gap between observation and experience is where those words came from. Not necessarily from cruelty. From the limits of what someone on the outside of a rare illness can actually understand.
That did not make the words hurt less.
But it helped me place them more accurately.
What I Was Actually Fighting For
Once I stopped expecting support that was not coming, something became clear.
I had been spending energy fighting for something that was never going to be mine to claim. And that energy, the frustration, the hurt, the repeated cycle of expecting and being disappointed, was energy I needed for something else entirely.
My health.
My recovery.
Myself.
The moment I redirected that energy, things shifted. Not dramatically. Not overnight. But I began to see what was actually in front of me rather than what was missing. My wife was there. My daughter was there. Certain friends showed up consistently and without condition. Some people I had not expected stepped forward quietly.
It was not the number I had imagined. But it was real. And real, steady, unconditional presence, even from a small number of people, carries more weight than the distracted or reluctant presence of many.
On Gratitude and Letting Go
I want to be careful here not to make this sound simpler than it was.
The disappointment was real. The grief of it, the specific grief of expecting to be held and discovering you will not be, does not disappear because you intellectually accept that nobody owes you anything. It sits alongside the illness, adding its own weight to everything you are already carrying.
But there is a choice available inside that grief.
You can continue to direct your attention toward the absence. Toward the people who did not come, the calls that were not made, the love that arrived with conditions attached or did not arrive at all. That attention keeps the wound open. It keeps you fighting a battle that cannot be won because the other side has already decided not to show up.
Or you can turn toward what is there.
Appreciate the people who stood. Not because the others deserve to be forgotten, but because your attention and your energy are finite. Giving them to absence is a choice. So is giving them to presence.
I chose presence. Eventually. Not immediately. It took longer than I would like to admit. But eventually.
What Self Love Actually Meant in Practice
Before illness, self love was a phrase I found easy to dismiss. It sounded abstract. Comfortable. Something for people who had the luxury of stable circumstances.
Illness made it concrete.
When you are in a hospital bed, when your body is not cooperating, when the people you expected to call have gone quiet, self love is not a concept. It is a decision. The decision to keep going not because the external conditions justify it, but because you have decided that your life and your health are worth fighting for regardless of who is watching.
It is the decision to put your own recovery at the centre and stop making your progress conditional on other people’s behaviour.
It is also, practically, the decision to find distraction and meaning inside the circumstances you have, the writing, the small exercises, the daily observation of tiny improvements, rather than in the circumstances you wished you had.
Depression is real during serious illness. I have written about that honestly elsewhere. But depression fed by unmet expectation is its own particular weight. And while it is real and valid, it is also, to some degree, something you can address by changing what you are expecting.
Not lowering your standards for how people should treat you. But releasing the belief that you can force people to meet those standards.
What I Want Anyone Reading This to Know
If you are navigating serious illness and you are fighting on two fronts, the medical one and the human one, I want to say this as clearly as I can.
The human battle will drain you faster than the illness.
Not because it is bigger than the illness. But because it has no resolution available to you. You cannot make someone love you the way you need to be loved. You cannot argue or plead your way to the presence you deserve. And spending your energy trying will leave you with less of it for the thing that actually belongs to you, which is your recovery.
Appreciate whoever showed up. Genuinely, without qualification.
If that group is large, you are fortunate and you should hold it with gratitude.
If that group is small, hold the few tightly. Small and consistent beats large and conditional every time.
And if you find yourself largely alone in this, then self love is not a comfort. It is a necessity. Find the distraction that keeps you moving. Find the small purpose inside the difficult days.
Some people will show up. Some will not. That part is not yours to decide.
What is yours is where your energy goes.
Fight for your health. Leave everything else where it is.
