amber rahim

Chronic illness: the parts we don't talk about

Tag Archives: Empathy


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What’s different about chronic illness? No.2: Disturbance

On Tuesday evenings a nurse comes to our house to look after F so that J and I can go out. We mostly go together and sometimes we each go our own way with friends. You know, try to have a social life.

This Tuesday I came home to find her on her chair in her room, wrapped up in her quilt. Eyes closed. Disturbed. Her bed was wet and so the bedding was being changed.

I stepped into the room to help out and the only thing she said was “can I go back to bed?”

Every night around this time we get her out of bed to take her to the bathroom. Due to Bartters Syndrome she pees so much that, even with super absorbent night pants, we can’t keep her clothes or bed dry without this nightly trip out of bed (and sometimes not even then).

I often wonder what it is like for her, to never be able to sleep through the night undisturbed. Never.

I think I got a bit of an answer when I saw her there on the chair, eyes closed.

We delight in the beauty of the


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Rare Disease Awareness Day 2014


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28th Feb 2014 was the 7th Rare Disease Day.  I only found out about it this year so although a lot of work has been done (over 1000 events in 70 countries have been held) there is still work to be done.  So this is my first contribution.  Go and have a look at what they have to say (but first finish reading my post ;0).

What is a rare disease?  I wrote about my definition in a previous post and the people at Rare Disease Day have a more scientific definition but when you get to their common problems bit you’ll see the similarities.  Nobody knows much about them.

In addition to the obvious impact of this lack of knowledge there is an underlying problem that we don’t really look at: empathy or rather, the lack of.

Let’s start with my lack of empathy. A few years ago whenever I heard someone talk about their child having a cold or being sick there was a part of me that muttered “oh puh-lease!  That’s nothing.  You have no idea how lucky you are”.

I couldn’t listen to their stories, I didn’t understand what that was like: to see your child healthy one moment and then suddenly change and become sick.  My baby was sick all the time.  I couldn’t relate. I had no empathy for them.

It took a little patience on my part (and isolating myself from other people and feeling pretty alone, to be honest) for me to realise that we do have something in common: being a parent of a child who is sick.

Every parent worries. It’s never nice when your kids are sick.  I don’t mean just the cleaning up the puke and poop. Seeing your child in pain, with a fever, knowing that you have done all you can and you still can’t take away their pain. These are the really crappy moments.

So, although I don’t know what your life is like when your child is healthy and ok most of the time, I do know what it is like to see my child suffer so I offer you my empathy, parent to parent.

In honour of Rare Disease Day I ask you to offer your empathy to all those people who have a rare disease.  You may not know what their disease is or what impact it has on their lives or even how much harder life is for them. But you do know what it is like to get sick or look after a sick child. You can relate, you can empathise.

Let them know that.

p.s. it’s not sympathy we are looking for, just some understanding.


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Taking empathy too far (sharing the pain, literally)

For years now I’ve been thirsty.

I have a dry mouth, I overheat easily and I get headaches.

My skin is dry and flaky.

I get more spots than I ever did as a teenager.

I am an expert in how to hydrate and know all the signs of dehydration.   That’s why I know that I have chronic but extremely mild dehydration.

I know I should drink more, it will make me feel better.

Yet I don’t.

It would be easy to say that I’m so busy looking after my daughter and keeping her hydrated that I don’t have time for myself.  In the first few months, that was probably true.  6 years later I can’t use that excuse.

Thinking about it now, I rationalise that it is helping me to build empathy.  The definition in the Oxford English dictionary is: “the ability understand and share the feelings of another”.  So is it helping me with this?  Well, yes.  I feel rubbish and so does she, so we are sharing.  Although her dehydration is severe while mine isn’t, I can better imagine what it is like for her.  So there is understanding.

Yet while I can understand more I do not understand everything.  How can I?  I’m not her.  I don’t know what this is like for her, through her eyes, her body.  I have never felt so dehydrated that someone saying the word “food” has made me vomit.

So what am I doing?  It makes me crabby.  My head hurts.  I become short tempered.

Why am I doing this to myself?  I have a suspicion that it is deliberate.

I have never actually consciously thought “how can I be hydrated when my baby suffers from chronic dehydration?”

Yet it is like I am punishing myself, denying myself, for being healthy.  It is hard to watch someone you love be in pain, be ill, with no end in sight to the suffering.  Sometimes it is the “chronic” part of the illness that is the worst.  When will it stop?  Never.

There is truth in this, I am deliberately denying myself.

It’s such a passive aggressive thing to do to myself and I am stunned.  I abhor passive aggression.  I would much rather have a heated debate, an argument, let things get messy, than be subjected to the stealth campaign of passive aggression.  If it isn’t out in the open, how can you deal with it?

So this is me bringing it out in the open.  “Hi, my name is Amber and I have been subtly sabotaging myself for the last 6 years”.

Admitting it to you, now, has given me a renewed sense of relief.  Phew.

How did I finally see it?  I have been working with my coach to create my version of a fulfilling life.  To find the courage to take a leap and choose my path, the path that is filled with things that make me feel good, that give me energy, make me happy.  It’s not a stunning path, nor is it amazing to anyone but me.  It is my path.

While walking on this path, I have been practicing opening my eyes and I am amazed at my discoveries.  The most recent one is what I am writing about today: my self sabotage.

I now drink at least one glass of water as soon as I wake up.  This small act alone helps shake off some of the grogginess of a disturbed night and takes some of the puffiness out of my eyes.  (It is the best beauty secret and it’s a secret because it’s practically free.  Rehydrate your skin?  Forget Olay.  Drink some water.  Oh and sometimes have something a little bit salty with it to help get the water into your blood where you need it).

I have days when I succeed and days when I don’t, but I am getting better at taking time to drink regularly, throughout the day.  The way my daughter does.

When I do this, the difference in me is noticeable.  I can focus, I feel less tired. I have energy to be more patient with my children.

Empathy is still important to me but I have finally realised that I do not need to be sick to have empathy for sickness.

And the guilt?  That is still there.  At least the self harming has gone.