amber rahim

Chronic illness: the parts we don't talk about

What’s different about chronic illness? No.1: Sickness scale

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It’s coming up to Christmas and I am taking 2 weeks off from everything.  My next post will be in January so with heartfelt gratitude I thank you for reading my blog and sharing this with me.

I invite you read my first blog https://amberrahim.com/2013/08/28/finding-my-daughter-behind-the-illness/ and with that spirit, enjoy the beauty of those in your life.  See them for who they are and cherish them.

Enjoy these last 2 weeks of the year and wishing you good health.

Sickness Scale.

My mother once gave me some advice for when your child is ill.  “Sometimes you just need to sit up all night with your children and hold them”.

I have found it to be true.  Sometimes your children are so ill that it comforts you both to do this: your child finally sleeps in your warm embrace and as a parent you are soothed by being able to give comfort.

But how long can you keep this up? One day, two?  Maybe even a week, if you take turns with your partner.  But what if they are sick for weeks, months and you just don’t know how long it will be before they are better?  You want to keep on holding them for as long as they need but when chronic illness is involved, your children are really ill, really often.  Their need for comfort is high and our desire to provide it is strong.

So you try to keep it up, you get tired and eventually a shift starts to happen.  They need to be more sick before you stay up all night.  It gets easier to go back to bed.

Your assessment scale for illness adjusts.

In the beginning they need to be on a 7-8 on the sickness scale to warrant an all nighter.  With a chronically ill child you will do the same.  Sickness level is 7-8?  Ok, stay up all night with them.  It’s the definition of that 7-8 on the sickness scale that changes, not the number.

If they normally throw up about 4 times a day, you notice when they do it 6 times a day and start to get worried at 8.  When they stop playing you know it’s really bad and maybe it’s time to go to the hospital.

(side note: yes, kids can throw up regularly and still carry on playing and having fun. My little champ has been doing it for years.  Well you can’t spend your entire childhood not playing!  Seriously though, I do not know how she does it.)

Your whole view of the world changes.  What’s normal?  What’s worth worrying about?  What’s serious?

From the outside we can seem callous.  “What, your daughter has just been sick and you don’t ask her how she is and give her a hug?”.  No, but I do teach her how to keep it out of her hair and off her clothes and shoes.   This is normal for her.  Do you pick up your toddler every time she stumbles? Or is that just normal?

When people don’t understand, and it is really easy of them to misunderstand, it can isolate you.  I don’t blame them.  When it comes to illness, there is little common ground between you.  With parents who also have a child with a chronic illness or people who themselves are ill, it is different.  It’s why we get on so well, even when we live on other sides of the world.  We share something that many of those around us don’t even know about.  We have a different sickness scale.

So next time you wonder “don’t they care?” or hear me say “she’s doing well”, remember: yes we do care and she is doing well, for her.

Our world is just a little bit different and you need to understand the context: our normal is not the same as your normal.  Take time to see us, really see.  You will see someone who says they are ok but is in pain.  That’s because they are ALWAYS in pain like this.  So yes, they are ok, but they are still in pain.

Take time to understand and let us in.  We want to connect with you.  We want to be understood.  We want to be seen.

So my mother is right.   Yes, I have just admitted that to the world, will I ever hear the end of it? (actually, I am proud to do so).  Sometimes you just need to sit up all night with your children and hold them.

Please leave a reply, I would love to hear from you.

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