They say “Beauty is only skin deep” and I agree with them. But in most of the cases “they” do not have to cope with eczema. Only someone who is living with eczema day in and day out knows how difficult it is not to wilt under the stares, looks and occasional taunts of other people. I might not know it first hand but I do feel the pain every time my baby tells me a heartbreaking incident of another child (mostly) who teased her or commented on her looks, weight etc. It is very hard for me not to cry in front of her and/or find that person and go charging at him or her and give a piece of my mind. I myself have been blessed with good clear skin and I would give anything to change places with my daughter in this regard.
I do know that however difficult it might for both of us, the best way I can help her is by teaching her to be strong and to be prepared to answer questions from other inquisitive children and people. I also remind her often that we are proud of her and that she is a brave girl. Because, as much as I would like to protect her from all the hardships related to her eczema, I know that I cannot be with her all the time. And a major part of her struggle is not just physical. It is a mental struggle just to accept the reality of this chronic condition as well as to cope with it. Add to this she is just seven years old and you can see what I mean. Thus, a big part of the support is to teach my daughter to live with severe eczema and be happy in spite of it (till the time she grows out of this or we are able to find a way to get rid of it).
I still don’t have the answer to her question ” why did this happen to me and not anyone else?” And perhaps I never will. But what I do tell her is that she is not alone in this and though she might not realise it there are so many other children like her who have severe eczema and other different serious medical problems. But, unlike other medical conditions, eczema makes it difficult to hide the condition due to its physical manifestations. This is one major aspect which makes it so difficult to cope with.
There are moments when my daughter will keep asking me the same questions over and over ” when will my skin get better?” and ” will next year be worse?” ( her terrible experiences with eczema this year and last is the one which prompts this question and has been captured in my earlier posts). I can only reassure her that it will and next year will be better but I am unable to put a timeline to it. I do not want to make empty promises to her but at the same time I need to keep her spirits high (which is easier said than done). I constantly reassure her that all her caregivers including her family and doctors are looking out for her through her medications and other measures. It comforts her to be reminded often that she is not alone in this. I am sure that those of you who have children with similar chronic conditions would be doing everything 24X7 to keep your child in good spirits. I decided to share some of the things that are working for us (well most of the time).
“Stop scratching” doesn’t help
There a lot of times that her itching increases significantly. I have realised that she simply cannot stop scratching when she sweats a lot or is very stressed or sleepy and saying “don’t scratch” will not help. Luckily, she is a creative child so I have been able to somewhat distract her by helping her do some craft activities, drawing and painting and puzzles at various points in time and reading to her and even singing together. These are things which interest her and help her calm down. Thus she is able to relax mentally and the antihistamines seem to work faster. I have also just started doing yoga with her ( with the help of short videos of yoga meant for children) as another way of controlling her stress and helping her relax. I hope to give you a positive update on this in the future.
A child counselor or psychologist
I recently took Aiyana to meet a child psychologist as we had been planning for some time. Her doctors and I agreed that it might help her to speak to a third person (especially to a trained professional) since hers is a chronic condition and in light of all the trauma that she has been through in the last couple of years. Lately, she had also been complaining of nightmares with regards to her itching and skin condition (this seems to have stopped in the past week or so). When I took her last week it was heartening to be assured by the psychologist that Aiyana seemed to be a happy, balanced child in spite of all that she has endured in her young life. Still, Aiyana was very happy to have someone in authority listen to her problems (apart from her parents and doctors) and so I will be taking her occasionally for counselling.
You are not the only one
This is one thing I keep repeating for both our sakes. I have to remind her that there are many other children ( and other concerned/stressed parents like us) like her out there even though they may not be part of our friends and family.What gives her some measure of comfort is to hear the inspiring stories about other people who battle their own demons, handicaps, debilitating conditions and have still managed to live life on their own terms. She especially loves hearing about true, inspiring stories of children with physical disabilities who have succeeded in sports and others with serious medical conditions and yet led happy lives. I am motivated by encouraging stories of mothers who have moved heaven and earth to enable their children suffering from severe eczema live a comfortable and happy life and of some other mothers who have gotten rid of it as well.
You’re beautiful inside and out
My darling Aiyana is the sweetest daughter that anyone could ever have and one I could have ever wished for. Her complete hair fall earlier this year has caused her much heartbreak and she still endures teasing from other children from time to time about “looking like a boy“. All those times when she cries her heart out because some child in school has told her she has such bad skin or try to peek under her scarf and tease her about her lack of hair, this is what I tell her. That no matter what one looks like on the outside and no matter how much emphasize is on one’s looks, what matters is that she is a loving, caring child who makes our world a better place to live in.
“When life gives you lemons, make lemonade”
And last but not the least, this is our new-found motto. I have shared the secret of living a happy life (in spite of all the problems) with my daughter – ” just add some sugar” when your life is filled with lemons (I have even managed to find and buy a tshirt for her saying the same thing- she is very happy wearing it!).
We try to look beyond the pain and look at the possibilities as well as all the achievements. This helps us to look at a future filled with hope and a determination to live life by enjoying each and every moment. And if that is not enough, I can always count on loads of hugs and kisses to lessen the pain for my daughter (however momentary it might be).
We laugh and make our very special ” lemonade” on those days that seem overwhelming.
I hope you can find a way to make your own with your child as well!
When the going gets tough…(Part 1)
Very beautifully written
Thank you Suparna 🙂
It is amazing how our children can inspire us sometimes with their strength and ability to cope with such stress. My daughter is just 4 so her friends and classmates are not yet so aware or conscious of the differences in her skin and appearance. Even so, her dietary restrictions and also clothing, etc., do make it difficult to fit into a group. She cant have any food with dairy products or nuts in it which makes going for birthday parties difficult. Many children often ask her why she is eating food packed from home instead of the party food. Her confident response to them that “its because i have an allergy!” always touches me. Whether its related to food, or the full sleeve cotton kurta and pyjamas she has to wear sometimes in front of her friends – her absolute confidence at so tender an age is inspiring. She seems to be comfortable ‘in her own skin’ so to speak. While she also does look forward to a future where she can eat, wear or do things that other kids can, i am grateful for her ability to cope with the present. Aiyana is certainly not alone in this and i am sure these kids will be stronger adults for all that they have gone through right now.
I am so glad to hear about this about your daughter, Kavita. My daughter went through similar dietary restrictions last year and it was tough for her. Just wanted to share our experience…children certainly teach us a lot 🙂
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Vanita Rungta shared Anindita Guha Maulik Rungta’s story.
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my amazingly brave and loving neice..you are seven years but as an adult I have learnt from you…!!!
Beauty is not just “skin” deep- helping your child cope with…by Anindita Guha Maulik Rungta
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Vanita Rungta When I came to meet you in the ICU..on your birthday… you were so excited and happy.and you had gone through inexplicable trauma….and your fourth question to me was how tao(ANUP) is..I wonder how many of us would have asked this being so unwell for such a long stretch of time…I will not forget the hug you gave me when you were able to walk after almost a month…and inspite of going through the trauma in the hospital the way you would tease the nurses and laugh watching videos and your xcitement to meet your little brother after a month…visions which will remain with me always!!! We are lucky to have you niki,your love,your gentleness!!
Thanks bhabi for the lovely words…it really means a lot to us!
Came across your blog by accident, but I am glad I did. I know only one person with eczema and he makes it look easy. Although growing up must have been tough for him, I never really gave it much though. Your blog makes me aware of how tough it can be, especially in an Indian setting.
Thank you for your inspiration and I wish you and your family the best.
Thanks Rajat for your words of encouragement and your wishes. One of the thoughts behind sharing our experience through this blog is to create awareness in our country for this condition.
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I just found your blog and the information listed on here is so well researched and informative. I’ve been suffering with eczema for 21 years right from when I was a kid and your experiences and daughter’s experiences are very similar to mine and my mother’s. I remember saying those exact words when i was small to my mother. Growing up with this was difficult, especially in an Indian setting in the early 00’s where not many would try to understand what you go through. It was and sometimes still is difficult to manage.
It is a very tough journey and I empathise with your daughter a lot. She is very beautiful by the way. Blessings to you and your family,
Thank you so much Reshma for reading my blog and writing to me. Only someone who has walked the same path can really understand what another person is going through so its always nice to connect with such people. Do you still have eczema as an adult? Where do you reside now?