IIH | Living With The Misconceptions #IIHAwarenessMonth

September is the month IIH sufferer's call on you to help raise awareness for the rare brain condition we live with everyday...

The bullshit button. I wish I had one to angrily press each time I see, read or hear misinformation about Idiopathic Intracranial Hypertension. In my first post of #IIHAwarenessMonth, I touched on how the media portrays the rare brain illness I suffer with as self-inflicting and not-so-serious but today I'm parting the truth from the lies. I'm really going to try not to rant, I'm sorry if I rant.

BUT YOU DON'T LOOK ILL
Wearing fake tan doesn't take away my short-term memory loss, cure my intense pressure headaches or restore my limited mobility. Sorry, I didn't catch the memo on what being sick looks like. Forgive me for applying a lippy and still having a life-changing brain condition. Unless you're spending time with me or strangely observing me, I'm probably quite an average twenty-something beauty blogger. Disabled doesn't look like anything. Please keep that in mind before judging anyone, there could be a reason for their actions.

IT'S YOUR OWN FAULT
Bullshit. Idiopathic means unknown. If I could leave it there, it'd be great. Unfortunately though, the Daily Mail recently made light of IIH with a headline that Red Bull caused the debilitating brain disease. It doesn't. Obviously, it doesn't. If I had a £1 for the amount of times my family and fellow IIH sufferers have offered crazy theories as to why the condition suddenly appears, I'd be one rich gal. The reality is, nobody knows the cause. I hope in my lifetime I do.

IT'S JUST A HEADACHE - TAKE SOME PAIN RELIEF
Chuck us a paracetamol and we're fine. Wrong. If you put the plug in your bath and left the water to run, it would eventually overflow. Unfortunately, the skull is like a box and the overflowing water (or spinal fluid in this case) has nowhere to escape. Intense pressure is put on the brain which often causes brain fog, memory loss and cognitive impairment. Blood vessels become constricted and narrow which can lead to a lack of oxygen and put you at a higher risk of strokes. It's scary stuff. And it freakin' hurts. Pain relief is often a no-go because it can cause rebound headaches. From one headache to another, it's just not worth it for some.

LOSING WEIGHT IS THE CURE
It's the cure of just about everything isn't it? Don't get me wrong, having a healthy body and mind is important but being slim isn't always healthy. My fellow sufferers come in all shapes and sizes, many have fitted the 'normal/healthy' category on their BMI chart, either at diagnosis or due to weight loss being recommended as their treatment. For the majority, it makes no difference to their IIH and many have complained of a deterioration in health. Positively, weight loss has sent some into remission but there's no proof it's any sort of cure.

YOU CAN'T HAVE IIH WITHOUT PAPILLEDEMA
This will probably mean diddly squat to you, but to an IIH sufferer who's not only battling their chronic illness but also their doctors, this a huge deal. Although swelling of the optic nerves behind the eyes is a very common symptom, IIHWOP exists. And here is the proof. This medical paper is like gold.

Share this post, visit the IIH UK website, use the #IIHAwarenessMonth hashtag to tweet about it, even just google it. Please just be aware that IIH exists. Any of the small things above will make a big difference and I'll be so, so grateful.

Please take a moment to go over to Kate's blog. She's a fellow beauty junkie and a very brave IIH sufferer who is collaborating with me over the course of IIH Awareness Month. Go show her some love.

2 comments

  1. This was such an interesting post, I'm catching up after having horrendous wifi in Greece! Although I don't have IIH I do have an invisible illness and have go through so much of the same bullshit as you, people thinking because you have luckily been able to leave the house and had someone do your hair for you you must all of a sudden be "fine" it is so annoying!!! Sending you all my love and huge hugs my darling <3 xxxxx

    Zoe ♥ MammafulZo

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  2. Totally get everything you say in about IIH. Im a fellow sufferer here and its awful. I lost 7 stone of weight and it briefly went away but is back again now!

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