13 November 2012 ~ 0 Comments

Kids With Chronic Illness – Part 1

Some months ago, it occurred to me just how many friends I have whose children are suffering from chronic illnesses. I cannot say that I remember having classmates or friends in my childhood who were thus afflicted and so I began wondering whether there is a rise in chronic illness in children and what might possibly be causing this. I also realised that all too often children are not given a voice when it comes to such serious topics although it is apparent that they have much to say. As a result, I decided to interview several of my friends’ children and present the results to you in these subsequent articles.

First off, I would like to start by saying that my suspicion about the rise of chronic illness in children was of course correct – according to this article and this article, which reference several studies on the subject. The first article from 2007 states “The number of American children with chronic illnesses has quadrupled since the time when some of their parents were children”. Based on data from a 2007 study, it was estimated in 2011 that 43 percent of US children currently have at least 1 of 20 chronic health conditions assessed, a figure that increases to 54.1 percent when weight problems or risks of developmental delays are included.

Both articles theorise that possible causes may be environmental – once upon a time (for me this was in the early 80s), we used to get home from school, ride our bikes or get out our skateboards or roller skates. Today’s children have bigger and faster computers and tend to spend more time inside in front of the television, a factor that can however be controlled by the parent(s) looking after them. Now there is also a rise in fast food and genetically modified foods and with it a rise in the number of food intolerances and allergies (I certainly never came across anyone with a food allergy in my childhood and now they are rife!). More parents are getting their children vaccinated, which is another controversial topic as vaccines are said to lead to conditions such as autism. Environmental pollution is on the rise as are divorces and break-ups, so that many children no longer feel safe and secure and as we know our mental wellbeing can also affect our physical wellbeing, e.g. excess stress can lead to excess cortisol and countless other conditions.

Naturally, some of these kids are ill because it’s in their genes, but certain factors mentioned above – if present – will definitely favour the proliferation of these illnesses. And then there are kids who are given the best possible start by knowledgeable parents who truly care and yet they still fall ill. Some of the mothers I talked to in the following interviews were simply amazing and I’d like to doff my cap to all of them for the love and dedication they give to their children.

I’d like to offer these two links for those who want to find out more about the topic and are looking for tips on how to deal with children who are chronically ill:

  1. Brave Kids, a website for children with disabilities and chronic/life-threatening illnesses, provides a support community, information and resources on numerous medical conditions like genetic diseases, autism, cancer, cerebral palsy, etc.
  2. Coping with chronic illness in children

Now on to the first interview. When I first asked for volunteers to be interviewed on Facebook, I received this touching email from mother T (no names or personal details will be mentioned in these articles in order to protect the identity of those sharing their experiences):
“My daughter is 14 and I showed her your post and she said she would be interested in helping with your story.  She has been sick and out of school since December with vertigo and various aches and pains everywhere.  She hasn’t been able to walk since mid-January and is expected to miss the rest of the school year.  She’s had so many tests that come back inconclusive or negative and it’s so frustrating.  She’s lost so much and is suffering from depression as well now.  The doctors keep going back to ‘it could be fibromyalgia’ if they don’t find anything else.  They are scheduling her for a spinal tap in the next few weeks and then we don’t know. She would love to be interviewed if you are interested.  I am T, her mom, and think it would be nice for her to be part of something like this since she feels so disconnected from the world right now. Thanks for the opportunity”.

Sarah: Can you please tell me what illness/illnesses you’ve been diagnosed with and describe its/their symptoms to me?
A
: I’ve been diagnosed with vertigo and fibromyalgia. Vertigo is the feeling that you and/or everything around you is spinning. I have this feeling constantly. I have also been diagnosed with fibromyalgia. Fibromyalgia is pain that is very widespread. I have pain everywhere: my back, neck, shoulders, leg, hips, arm, everywhere you could possibly imagine.

Sarah: How has this changed your life?
A
: These illnesses have changed my life in the way that they are very debilitating. It makes such simple things much more difficult to accomplish. I can’t go to school because of these illnesses, and I haven’t seen my friends in months. Also, for a few months, I wasn’t even able to walk.

Sarah: How have your friends and family reacted to your illness/es?
A
: My friends and family have been great. They are my biggest supporters. They are always praying for me, thinking of me, and offering me any kind of help that they can give. I wouldn’t have been able to make it through this without my support group.

Sarah: How has this affected things at school?
A
: My illnesses have affected me a lot when it comes to school. I haven’t attended school since December. The vertigo makes it hard to sit up for a long period of time and to concentrate, and the pain is very distracting and hard to deal with. I was getting home tutoring, but as my illnesses worsened I wasn’t able to do it anymore. I have to repeat my grade again next year.

Sarah: Has anything positive come out of this?
A
: The one thing that I am very grateful for in this experience is that I have learned to appreciate the little things more. I didn’t realize how blessed I was to be able to do such simple things like walk, jump and dance. I didn’t think about the people who couldn’t do those things until I became one.

Sarah: What has this experience taught you?
A
: This experience has taught me to appreciate what I have while I have it, because it might not be there forever. It also taught me to realize how blessed I am to be able to do the things that I can.

Sarah: If you could change anything about the way society deals with chronic illness in minors, what would that be?
A
: If I could change anything about the way society deals with chronic illness in minors, I would definitely make people more aware. When someone sees someone in a wheelchair or with a walker, they feel bad for them, but they really don’t realize how much they have to go through. It’s more difficult than anyone could imagine. I would want people to know more about chronic illnesses and just be more aware of them in general.

Sarah: Would you be interested in being put in touch with others in your situation?
A
: Sure, I would love to be put in touch with others in my situation. It would be great to compare experiences and talk to someone that really ‘gets’ what I and they are going through.
[Sarah: If anyone would like their child/ren to be put in touch with A, please email me your preferred mode of contact at sarah@sarahjdowning.com and I will pass along your contact details so that A can contact them if she wishes].

Sarah: A, Thank you very much for your participation and for helping to raise awareness for others in your situation.

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