Dear Atopic Dermatitis sufferers, parents/caregivers,
and those who are going through devastating side effects after ceasing Topical Steroids,
I believe that your days are filled with stress and agony.
Even those who are very healthy make a big deal when they experience skin inflammation usually. Even if it is a tiny mosquito bite, they tend to complain about the discomfort and itchiness. However, the symptoms of Atopic Dermatitis (AD) and Topical Steroid Withdrawl (TSW) are incomparable to this, as it covers the whole body, is unbearably itchy, your whole body hurts, you are uncomfortable, its depressing, and you look unrecognizably bad…For those who are in the thick of this right now, its really a huge load to deal with…and I truly understand how hard it is.
When you go out with lots of skin inflammation and feeling ugly, I am sure you have experienced people asking you,
Or you maybe a caregiver with a child going through symptoms, your heart has been aching for a long time as you see your child suffering, and you can’t even remember when was the last time you had a good nights sleep…and someone asks you,
This seemingly innocent question can cut through the hearts of moms and dads.
(We are doing the best we can! Leave us alone!)
…And while going through Topical Steroid Withdrawl, the initial withdrawl symptoms make it seem that your condition is getting worse..
and during this hard time a random person may criticize your treatment plan, or give you some kind of ‘advice‘.
Even when this person hasn’t even read a SINGLE book about Atopic Dermatitis, they may give you advice such as..
‘Maybe you need to change your diet?’
‘Usually you need to make a lifestyle modification with a condition like yours.‘
When you (mom/dad) have searched through all the books and the internet about the condition, and are doing the best to take care of your child…How could they lecture about what to do, or what not to do…??
PLEASE STOP IT!!
I AM ALREADY DOING THE BEST THAT I CAN!!!!
I understand this anger you feel wholeheartedly….
I understand your deep sadness as well.
The vexing emotions are real.
I truly understand all of your feelings.
However…I will say this knowing that it may antagonize you…
For myself, even when I received thoughtless remarks, I do not get upset.
I don’t feel sad, or have vexing emotions.
I do not feel sorry for myself, either.
I truly DO understand all of your emotions while going on this rollercoaster ride, and the reason why you feel that way too. But I have never felt that way.
This must seem so odd to you.
Usually people get upset when someone questions what they are doing or lectures them about what they should do.
It’s not that I don’t understand these emotions – I actually feel that I totally understand why you feel that way.
And when I receive many messages about how horrible you feel on this journey, I feel deeply sorry for you and it makes me want to cry.
However, with that said, I still do not feel the same emotions.
When someone asks me,
my first thought is…
‘This is my CHANCE!!!’
I automatically think this!
‘Are you serious?’
‘You must be insensitive!’
Some people may feel this way about me, but to be honest, I am a very sensitive person that feels very deeply and empathetically to others.
With that said, being ‘sensitive‘ and ‘how you process your thoughts‘ are two totally different things.
Being sensitive does not equal = You are weak.
Sometimes people say malicious things on purpose.
But for the most part, when someone asks ‘What’s wrong?’, it is because they truly do not know, and have no information regarding the subject.
Because we are ‘different’ from what they know, they wonder why it is so, and speak without thinking.
And though it may annoy you, some maybe truly concerned about you and asking why you are having those symptoms.
You and I both know that we do not think 100% of the time about what we are going to say before speaking.
And the ‘What’s wrong???’ that we may encounter from time to time may be one of those moments where they are speaking without thinking.
Of course, this differs from the people who intently come lecturing at you, wanting to change your mind on the subject.
It takes a lot to come to a decision about which treatment works best for you. You need to study a lot of material, think about it a lot, make a decision, and commit to it. Even then, some people will say, ‘Why are you doing that? The other treatment is better!’
These people are trying to change other people’s mind, and these are not the type of people I am talking about today.
These things happens often, but for an example, when someone develops cancer, the patient is bombarded with information from surrouding people:
This treatment is good, there is this treatment that works great, etc…
And sometimes when the patient chooses a different treatment, some people may get very upset:
‘Why didn’t you choose the treatment I found for you! You might have gotten better if you listened to me!’
But usually, the patient with the condition has studied much more than any of their friends on the subject matter, weighed the pros and cons of each treatment, and have come to their own terms and decided on which treatment is best for them.
The people surrounding the patient can only offer information.
It is up to the patient to choose which treatment best fits their interests. That is their right.
So if you have people telling you which treatment to choose etc…, they lack the imagination to think about how much you have researched, and are pushing their own beliefs toward you. These people are still learning the basics to have a respectful human relationship.
It is not that I look down on such people who are giving advices. We are all in the midst of learning many life lessons, and they are still in their learning as well.
Just because a fifth grader does not know sixth grade material, there is no reason to make fun of them.
For an example, an adult shouldn’t get upset at a toddler for not knowing everything they know…lol.
Many of whom ask ‘What’s wrong???’ to you are not doing it with ill intentions. They don’t know any better. They just don’t understand your situation, and are asking without thinking.
This is why I do not get upset at the person asking me, or their reason for their asking. Instead, I realize this person truly doesn’t know about this condition…and think,
This is my opportunity!!!
and start talking to them about Atopic Dermatitis, and the side effects of Topical Steroids (TSW: Topical Steroid Withdrawal).
I was given a chance to educate someone who doesn’t know about this condition!!
It is a waste to not appreciate this moment.
In my past, I have lost 80% of my hair twice due to the side effects of Topical Steroids
. I had the similar hair cut as Francisco de Xavier
or one known as Tōnsūra,
and bet anyone would think ‘What the heck happened to you!?‘
when they saw me….lol
Even then, it would be divided into people who asked, and those who thoughtfully did not ask me.
I actually WANTED people to ask me, and thought (ASK ME!! ASK ME!!).
I didn’t want people to worry as if I had some other sickness, so I put on a hairband, and went to work with a big smile.
No shame involved here! I did not feel sad or sorry for myself (because, it’s not like I was doing something wrong!!) and I continued to enjoy my work.
And when someone would ask me, I was happy they did, and talked about the side effects of Topical Steroids.
By sharing my own experience, I could help and prevent one or more people to go through what I did.
This is a huge opportunity!!
To have Atopic Dermatitis or to experience horrible Topical Steroid Withdrawal (TSW), haven’t you felt that your life is difficult sometimes?
Even if you’d like to stay home from school,
Even if you can’t attend PE classes,
Even if it is impossible to work due to aggravation of your skin condition,
sometimes it must have been difficult to do it because other people don’t know how tough it is…and that’s why it can be an awkward request to take a sick leave for the symptoms or you have to be attentive to take such actions above for protecting yourself.
If they knew how hard the symptoms were, and if they knew it might happen to them too, the situation around you is going to be improved.
So, this is a huge opportunity!
Speaking naturally, and with courage (or maybe not with courage…it’s really not that big of a deal..! ), you can share the symptoms you are experiencing. While talking about your condition, you do not have to become depressed but tell them with positive attitude and a big smile. – Let’s share to educate.
You don’t have to feel like you have to make them believe you. You can just share your own experience. If they start to give you arguments, you can just accept that and say, ‘I see how some people can believe that. That sounds good too. However, this is what I think -.’ You do not have to convince the person that you are right, or even lecture to them. You just SHARE. That’s it!
By sharing and spreading this message, it will create a world where more people know about this condition, and it will also create a friendlier environment for the people with this condition.
This condition is hard BECAUSE THE WORLD DOES NOT KNOW ABOUT IT.
This condition is hard BECAUSE WE ARE NOT EDUCATING/SHARING INFORMATION.
There is no need to fight.
You don’t have to hide…
Rather than getting hurt by what others say to you, you can become a Quiet, Composed Revolutionary Warrior by sharing your own experience to take it as a great opportunity when you are asked.
Because no matter what others may say, whatever that is happening to you is very REAL.
For a brighter future, please take that one step.
When more and more ‘The Peaceful, Revolutionary Warriors‘ stand up, this world will begin to change.
I hope you really understand that you do not have to fight.
If you are having a really hard time right now,
You can prevent somebody from experiencing what you are going through. (It doesn’t mean that you whine or complain about it. Again, just share what would happen having Atopic Dermatitis, or side effect of Topical Steroids.)
If we think only about ourselves, all of this is way too depressing and we do not want to do anything.
However, when we see the bigger picture and realize that we may be able to help others in preventing the condition, we realize that we can do so by sharing.
This is the difference between ego and seeing the bigger picture with others.
If we live in a bigger way, life becomes more exciting and rejuvenating.
When someone asks this to you, it’s a cue to you!
‘Thank you so much for asking!!!’
and with a light heart, share the symptoms that you are experiencing.
With this one step, you have become one of The Peaceful, Revolutionary Warriors.
Have a wonderful day today!
Translated by Hikari M.
Edited by Tokuko Abfab
👇オリジナルポストはこちら👇 The Original Post