‘Sometimes I go all the way and scream in the shower’ | Columns & Opinion

“Let me start this column with the fact that I absolutely know that all the lovely, nice people around me mean well all their tips, advice, pity and words. And believe me: I have a lot of them! I mean nice people around me. And for that I am extremely grateful, so I sincerely hope that no one feels attacked by my story today.

It’s about misunderstanding. Let’s start at the beginning. alopecia wate? We all know a broken leg, but alopecia means nothing to a lot of people. When I explain that this is a hair disease and this manifests itself in me through extremely much hair loss, I often see recognition occurring. “Oh yes, I sometimes have that too. Then the whole shower drain is really full.” And that’s exactly the answer I don’t want to hear. I knowEveryone has periods with more and less hair loss, but please take my word for it that there really is a difference between ‘some more hair loss’ or ‘extreme hair loss due to a hair disease’. I’ve been able to show pictures once. From the well, from my brush, from my pillow that is full of hair. But it didn’t feel right to have to prove myself.

To startle

Since I share my story on Instagram and do post those photos, there have been friends who are scared of an accident. Who are only now realizing what I mean by a lot of hair loss. It’s nice that this is finally clear, but then the following reaction often follows: “Fortunately, you don’t see bald spots on your head yet” and that’s it. They only see the outward appearance, whereby friends who have known me longer may notice that my hair is thinner than it used to be, but that’s it. While this is only half the problem for me…

The appearance is one thing, but the daily struggle with hair loss is another. I wash my hair in the evening so that my husband is at home and can reassure me if I panic. It’s hell every time I have to go through. First wet, then wash, then a mask, then comb, blow-dry and brush. Six moments when it comes out with bunches. Last week I was just about to get out of the shower when there was apparently still a ball of hair hanging from my neck that suddenly fell on my leg. These are moments when I sometimes go completely crazy and literally scream in the shower.

Hairache

But of course it doesn’t just stop at washing. Also the brushing, putting my hair up (and sometimes standing in front of the mirror for hours and hoping it becomes just a little more presentable than the minute before), the hair that can be found everywhere and finally the hair pain I experience. You read that right: hair pain. You know that feeling of a tail you take off and it’s been way too tight? Exactly that, but in random places on my head. For that reason I really have to wash it every other day, because that reduces the hair pain.

The sadness about alopecia is therefore often on two fronts: the appearance and the confrontation with the hair loss. And then the comparisons follow. I’ve heard everything about it, but most often: “It will probably be a bit like people who are overweight.” Now I certainly do not want to downplay this problem and I know of course that there are people who cannot lose weight due to a condition. But there is also a group for which a solution is on the horizon (although this road sometimes seems terribly long and endless): losing weight by, for example, eating differently and exercising a lot. And that is exactly where the big difference with alopecia lies. Even though I go to the gym ten times a week and live on water and bread, it won’t change my hair. If only I could do something!! Believe me, then I would have taken the most expensive sports subscription available.

The emotional pain I experience from this illness will not really make people understand until they go through it themselves. However, I think by now my husband can kind of imagine what it must be like. Not only because he experiences everything so close, but also because of his promise. “When you take your hair off, so will I.” Once, when it was far from that, he promised this. Now that this moment seems to be getting closer, even he notices a little fear. This feeling made him realize what it might not bring about for me. But this just strengthens him in his commitment. He wants to go through this process with me. If that ain’t love!”

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