What It’s Like Having An Invisible Illness, Because Nobody Ever Seems Convinced We’re Sick

I am quite seriously and chronically ill.

However, the biggest problem I face is the fact that I don’t look sick. I’ve written about how illness led to isolation and abandonment by several of my previously close friends.

The bright side?

While I might be down a few friends, I’m now more sure than ever of who my real friends are. They are the ones that stuck beside me, no questions asked, and no judgement passed.

And two years on, they are still there.

And still no questions asked, and still no judgement passed.

To those who stuck beside me and afforded me such a privilege and display of empathy and kindness, I am so grateful to you.

More than you know or realise.

However, every now and then – often coming from the most well-meaning of people (including friends and family members) I get asked certain questions.

“Are you sure that there’s no cure?” They’ll ask.

Yes, I’m sure. I’m pretty sure my doctor, my specialist – and the internet – wouldn’t lie to me about what’s wrong and treatment options.

“Have you tried this [insert tablet or herbal remedy here]? It worked for my friend’s sister’s aunt’s cousin.”

To be honest, I probably have. I have a fishing box and a shoe box filled with different medications – both herbal, over-the-counter and prescription (all recommended by doctors). It’s not that I don’t welcome any suggestions – I do – but I have changed my diet. And lifestyle. And everything else. Please don’t be offended when I tell you that what works for your friend’s sister’s aunt’s cousin does not work for me. Even if we are both unfortunate to share the same chronic illnesses (chronic fatigue, IBS and endometriosis for me) it doesn’t mean our bodies will respond the same.

“But don’t you want to get better?”

This question is the only question I’ve listed that actually both hurts and irritates me.

Yes, of course I want to get better. What sane person would want to be ill? Seriously? I never chose to be ill. I never asked for it, and I certainly never wanted to fall ill. I didn’t even expect it.

Each doctor’s visit, even in Australia with Medicare rebates, is expensive – and that’s not getting into the whole list of hospital visits and specialists I’ve had to see over the past two years. I need to go to the doctor’s alone on a regular basis, because there is always something wrong. Whenever I take a simple blood test, there is always some anomaly.

Even when there isn’t (which is rare), the tests reveal something that often stumps doctors and specialists alike.

No one would choose such a life.

I wake every day and try and plan what I will or will not be able to do.

If my stomach is sore upon waking, I know that today is going to be a bad day. Eating will be excruciating, so by the time I finish work I’ll be light-headed and dizzy from a lack of food.

Because of chronic fatigue, by the time I get home, I’ll be ready for my three-hour nap. I’ll usually fall asleep while eating a snack (because eating is slightly less painful while wearing pjs and lying in bed with heat packs).

I’ll wake up towards seven, and try and have some dinner (all premade and frozen by my husband – left to my own devices, while working, I just skip dinner and continue sleeping). I’m still usually beyond exhausted, and my whole body will be in pain, rejecting the idea of being awake. However, I need to make lunch while I’m awake for the next day – always a salad, nothing heavy to irritate my stomach and always dairy free – and then maybe try and catch up on reading and watch a little TV.

I head to bed around 9-9.30.

And then we repeat, until it’s the weekend, and then I spend my days wrecked in bed with headaches and the inability to do much more than sleep.

Who would want that?

Who would choose that?

I don’t want to be sick, and I’ve yet to meet anyone who does.

But I can’t get better.

If a healthy diet was the key, I’d have gotten better a long time ago. (Seriously – had to complete a food diary and see a nutritionist and she said my diet was fantastic.)

I eat very little dairy.

Even less sugar.

I keep my foods bland (I have IBS, remember).

I exercise when possible (although that’s taken a back seat since working full-time. The bright side? With teaching, it’s very easy to do over 10,000 steps each day).

I do eat “treats” (or foods that are “bad” for me) but only when it’s safe (like a weekend day).

I monitor everything I do. I have to.

The consequences are too high if I don’t.

So I know you mean well. I really do. You want what’s best for me because you care about me.

But please don’t ask me, “But don’t you want to get better?” as if I have any choice in the matter.

Everything I’m aware about, I try and do and work to fix. I do everything I can to make my life as normal as possible.

And it’s insulting to think that you think I want to be this way, and I’m simply making a choice not to improve.