My story
A year, four relapses, and the question that was asked far too late.
I was 21 when it started. The first thing I noticed was my fingertips: as though my hands had gone to sleep and would not wake up. Then my legs. Within a few days I could not get out of a chair without using my arms.
Iran, 2018
The first time I got ill was in Iran. I was treated there, and I recovered relatively quickly.
What stayed with me was not the technique but the attitude. The doctor treating me had his own name on his own clinic. If it went wrong, it went wrong visibly, and it was about him. I noticed it in everything: how often he came by, how he answered, that he looked at me while explaining something.
I am not saying care in Iran is better than in the Netherlands. I am saying that there I felt somebody was personally accountable for what happened to me, and that I lost that feeling in a building full of people who will be working somewhere else next year.
The Netherlands
Back in the Netherlands it returned. And that is where the pattern started that cost me a year.
I improved. I crashed. I improved. I crashed. Four times in total.
I stood next to my hospital bed. On my own legs. Almost ready to go home. And I felt, with a certainty I cannot explain to anyone who has not been through it, that I needed one more dose to hold on to it.
The answer was: let us look tomorrow.
The next day I said my arm had less strength than the day before. Let us give it another day. The day after that, the same. And the day after that.
Two weeks later I was flat on my back again.
That happened four times.
What was actually wrong
It eventually turned out not to be ordinary Guillain-Barré. It was acute-onset CIDP: a condition that begins as an acute attack but then does not stop on its own.
That difference is not academic. It is the difference between one course of treatment and then waiting, and maintenance treatment to stop you collapsing over and over.
I relapsed four times before that question was seriously put on the table. Under the criteria developed in Rotterdam, which are in the international guidelines, that question should have been asked at relapse number three. In my case it was not.
The manipulative patient
I lay in that bed and I read. Every scientific paper on Guillain-Barré I could get hold of. Not because I enjoyed it, but because I could hear that the certainty in the room was not backed by knowledge.
And at some point I could tell the difference. I could hear when something was factually wrong. I could hear when expensive words were being used to win a conversation rather than to explain something.
That was not appreciated. I heard how I was described to colleagues and students while I was lying right there: that manipulative girl.
That is what happens to a patient who prepares. You are not seen as someone thinking alongside. You are seen as difficult.
The year
Altogether I spent about a year in hospitals and rehabilitation clinics. [CHECK]
I reached level 4 on the 0 to 6 disability scale: bed-bound, dependent on help for almost everything. I never needed ventilation. That is level 5, and I did not get there.
There was a point where I had nothing left. Where the hope had run out and only anger was left. I said things I am not proud of, to people who I felt were letting me fall apart when they could have prevented it.
I write that down because I do not want to pretend I got through this gracefully. If you are in that bed right now and mostly furious: that is not your worst side. That is a normal reaction to something that is not normal.
How I got out
I was told I would not leave my wheelchair. That is not what happened.
What I think mattered, in order of weight:
I kept believing. Literally. Prayer, and people around me with a positive outlook, did more for my recovery than I can back up with a footnote. For me that was the foundation under everything else. If you want something with that, there is a link at the bottom of this page.
I guarded my rest as though it were medication. Because it is. Nerve repair happens while you sleep. When people drained me, I told them I could not afford to spend time with them. That was uncomfortable and it cost me a few friendships. I would do it again.
I kept training when nobody expected anything of it any more. Not hard, but every day. Neuroplasticity has no end date, and it responds to what you do.
I changed how I ate. What I have to say about that is on the blog, and it is there as my experience, not as a prescription.
Why this site exists
Not to settle scores. There are no doctors named here, and that is deliberate. I would rather this site still existed in ten years and helped people, than have it taken offline because I wanted to name one person. For anyone who believes an individual clinician genuinely failed them, the routes that carry real weight, including the medical disciplinary board whose rulings are published and do name practitioners, are set out on the Dutch help and referral page.
This site exists because I want you to ask, at relapse number two, the question that in my case was asked far too late. Because I want you to know your MRC score. Because I want you to know that "we will look again tomorrow" is an answer you are allowed to push back on.
You do not get control of your body back straight away. Your say, you can have now. That is where it starts.
On faith and community
This part is personal and you are free to skip it. It is here because it was the most important thing for me, and leaving it out would be dishonest.
What held me up were people who prayed for me and who brought a calm I could no longer produce myself. If that speaks to you and you are looking for people like that near you, there is Gedoopt in Nederland, which is Dutch-language.
And if none of that speaks to you: that is completely fine. The rest of this site works exactly as well for you.