What does illness look like to you?

Think of yourself when you’ve been ill.

Think of yourself when you’ve been in pain.

What do you look like?
Do you look tired? or pale? does your posture change? Do you frown more? Clench your jaw? Do you take less care of your appearance? Stay at home? Stay in bed?

Probably because those are normal physiological and social reactions. Shut down till it passes, give yourself time to heal and don’t concern yourself with less important matters.

But what if you have children, do you drag yourself out of bed, do you do your best to follow your (their!) usual routines? Do you turn up at their school events or clubs feeling rubbish having made more of an effort than if you stayed at home?

I’m guessing the answer is yes. Because they come first.

Now what if your illness didn’t get better after a couple of weeks? What if the medicines your Doctor gave you didn’t help? Do you still stay at home? Do you stop attending social occasions? For how long? What if staying at home and cancelling plans makes it worse not better? What if in addition to the pain, exhaustion and illness you are now depressed as well? When do you not your illness come first?

Those who experience chronic pain and illness often hear “but you don’t look ill?” or “I know some one who had that and they looked TERRIBLE!” 

Before I felt ill everyday, if I had a cold or stomach bug or some other common affliction and someone said “you don’t look good, you should rest” a part of me would think ‘great, i’m legitimately excused of fulfilling what is expected, time to hibernate!’ safe in the knowledge that next week i’d be back to normal.

Now its one thing to feel ill all the time, its quite another to be reminded of it everytime you look in the mirror or speak to someone. So you rearrange your life, you go to bed earlier (this becomes less of a luxury as time goes on), you put on your ‘going out’ clothes, perhaps you wear make up when in the past you didn’t really bother. Maybe you learn techniques to adjust your posture, so you can stand tall even though it hurts and you’d really like to crawl up in a ball. So you look normal, maybe you look great!

Its not pretence, its not hiding, it doesn’t mean you don’t hurt. It does mean you feel slightly more like yourself.

If you want a brief insight into what my illness looks like, here are two moments from my life over the past few years.

My (First!) Graduation

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This was during one of the worst pain flares i’ve had. It was a time when I struggled to drive, stand or sit because of pain. But I got dressed up, wore heels AND make up and smiled. I sat for 2 hours during the ceremony whispering to a total stranger who was in his early 20s, good looking, outwardly confident, he was funny and easy to talk to. And guess what he didn’t look ill either! But he told me he’d dropped out of University in the past due to mental health problems, he told me he dreaded large crowds, he told how he was worried about finding a job and not being able to cope. None of this could be seen but I still believed him.

My hair starts growing back!!

 

Lupus like many other autoimmune diseases can cause hair loss. Its known as Telogen Effluvium, it causes widespread thinning of the hair rather than bald patches or overall hairloss. For me I estimate I lost at most 30% of my hair, mainly from the front and along my parting.  Every flare up I’ve had my hair has fallen out, sometimes at quite alarming rates. Then it starts growing back only for the cycle to start up again.A few years ago I had it cut from shoulder length to short bob as it looked really sparse. This time was different. It came through thicker and faster. At first it was fuzzy and I liked to touch it, it gave me hope. The photos above are after 4 months, it wasn’t the best stage as it was obvious and it literally stuck out – luckily it was winter and I like hats! Its now long enough and thick enough for me to tie my hair up and even consider growing it again.

Whats the difference between the two?

In the first photo I am standing tall, smiling and i’d made an effort with my appearance. But I was in pain, I was fatigued, I felt ill. The second I am at home wearing old clothes, no make up, I was struggling to maintain my weight so looking a little gaunt, my hair isn’t looking brilliant! But I felt well.

I was happy in both.

Illness doesn’t always look like you’d imagine.

Happiness isn’t reserved for those whose lives are free from pain.

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