Distress caused by ichthyosis

Hello to lost people.

You've been having a hard time with ichthyosis.
I knew about it from Tezuka Osamu's comic “Black Jack,” which I read when I was a kid, and for the first time I had a relationship with someone with ichthyosis. In the comic, a figure of a walker praying for blessings saying “this is the snake's curse” is depicted. Even though the cause of the illness was unknown, faith does not fix physical disabilities other than those caused by the mind.

If you have a physical disability, not only is the risk of that disability, but what you must overcome is the emotional pain of apparent discrimination. We must overcome the incomprehensible eyes of others.

Recently, in the world of people with disabilities, there is a growing movement to view disability as individuality rather than a handicap. My writing master had a physical disability, only his right hand could move properly, and he couldn't bend his leg,
When I walked, I was walking while shaking my body a lot. When we walk together, everyone sees it as an opportunity. But my mentor doesn't care. “Thanks to this obstacle where I can only use one arm, I was able to get used to writing. That's why I'm thankful for this obstacle. That's why I walk without worrying about other people's eyes.” I was saying that.

If a lost person did not succumb to the effects of ichthyosis discrimination and how to live, how much light would it be for people suffering from ichthyosis? For example, you can create an SNS to spell out the way you live (you don't mind being anonymous) living with ichthyosis. Attracting yourself just the way you are is a way to overcome obstacles with your heart.

Marriage is fine. Physical disabilities are shunned by women, but if you are open about ichthyosis and live your life, there are many kind-hearted women who will fall in love with you and accept you as disabled. Kids are fine too. It is not always inherited. Even if your child gets ichthyosis by any chance, if you, the father, are alive and well, your child will overcome obstacles and become full-fledged adults. My mentor mentioned earlier that each person has a “living role.” It makes sense that healthy people, people with disabilities, smart people, and bad people were born. Life is about searching for the meaning of life.

I also create a “living role” through monks. By all means, even if you are lost, please find your role in life. It's always there. Gassho

My sister has the same ichthyosis as you. They are married and have children, but their children don't have ichthyosis.

(I've edited this answer. /hasunoha secretariat)

　I think I've had a hard time until now because of this illness. You may have suffered a lot of disadvantages. But you've probably accumulated it within yourself without hitting anyone. From this sentence, I saw that you were a very kind person. I think any person who only looks at the outside without looking at your content is someone who distinguishes people by looking only from the outside, so let's keep it quiet. People who really understand are people who can see people from many angles. your text. It looks like you're taking your work seriously. The appearance of dealing with people, etc. There are always people watching. Maybe you're just not watching that person.
What I want you to understand is that I think you can imagine human pain the most. Once you understand that, I think you can think carefully about what to do next and put it into action. Even if you never become a great person, there are things you can do with your kindness and a little bit of courage.
Having said this, it's a no-brainer, but why don't you volunteer once? It may be an exercise where you can put kindness into action. You can do what you can do. Please don't overdo it. You might discover something.

The lost person

This is Kawaguchi Hidetoshi. This is a humble answer to the question.

Desperate worries due to illness...

It's a genetic disease, and I think it's unavoidable that people are concerned about beauty no matter what...

It might just be a little bit of relief, but...

First, I think it is necessary not to think too strongly about “genetic problems” in a negative way.

Actually, everyone has a “genetic problem” in some sense, and they always have some kind of genetic polymorphism or SNP snip (mutation).

It can also be said that this is one of the natural survival abilities that life needed during the evolutionary process in order to adapt to harsh environments.

It is more important than anything else for our survival that people who have each other's “mutation problem” help, support, and share with each other.

Don't let them give up right from the start. I'm sure there are people in this world who need you. Of course, good encounters and good relationships are also possible.

Please, I would be happy if you could be at least a little bit positive without throwing things around.

Please also refer to the following.

“Kill the weak. That's an unscrupulous question...”
http://goo.gl/XxhNBw

“... There is no such thing as an “excellent gene.” There are “genes that may be effective in a specific environment.” It is impossible to calculate what kind of “traits” expressed by genes favor survival in what kind of environment. For example, traits that are only regarded as “disabilities” for humans in modern society may become “effective traits” in the future. Therefore, if possible, it is better to have as many patterns of “disability (= physical irregularity, after all)” as possible, it is “insurance” in terms of survival strategy. ... There are no modern people who can survive being left alone in the Amazon jungle. This means that if we are placed in a natural state of life where there is no such thing as a “society,” all humans are “weak people.” The survival strategy of humans is that these “weak people” gathered and made use of as many “weak people” as possible. ・・”

Kawaguchi Hidetoshi Gassho