Wednesday, 13 May 2015

What I Learnt From Actually Being On Embarrassing Bodies

Just over a year ago I did a blog post about What I Learnt From Applying to be on Embarrassing Bodies, feeling very positive about even just being open about suffering from Interstitial Cystitis (which you can read about in more detail in my Living With An Invisible Illness post), something I've rarely talked about openly until the past few years.  

I was in town one day and was absolutely fine before I left the house, but found myself in the middle of an extremely painful flare up while by myself, leaving me unable to move, and it just so happened an Embarrassing Bodies truck was outside. I jokingly posted on Facebook about how I wish I had no shame for the chance to get free private healthcare, and surprised everyone (including myself) by going over and talking to them. 

A few days later they rang and said they didn't feel my case was strong enough to feature on the main show, but instead offered me the chance to have a Skype conversation with one of their in-house GPs instead. I was surprised that this disappointed me, realising by signing up I wanted to help raise the profile of the illness for IC sufferers everywhere, as well as people that may have it but don't realise because it's an illness that is often wrongly diagnosed or the symptoms dismissed since they can't always be proved physically. 

I was looking forward to at least getting the chance to speak to a private urologist, something I never thought I'd ever have access to - just to find out it was in fact going to be televised. I didn't expect to feel so emotional about it all - I spend most of my life with people not believing I'm in pain every day or telling me to suck it up because it's only a bit of tummy/back pain (obviously people that have never had IC or understand what it must feel like to have a constant kidney infection but 10x more painful), and only recently found a specialist that understands my condition and how debilitating chronic pain can actually be, so being able to talk to someone in private healthcare that understands just felt life changing.

I was told that after my couple of minutes on the show, I'd get an hour long private one-to-one with the specialist, then an email listing all the advice he gives. I figured even if I didn't learn anything helpful, even just getting recognition that someone actually understands the daily struggles I face and being able to help others that suffer the same was worth going on national television and talking about how I have to go to the toilet 30+ times a day (because obviously they wanted to focus on the more embarrassing side of the illness, rather than the fact my pain was my biggest daily struggle at the time).

The day came, and I was so excited to raise the profile of IC and potentially help others. I went on the show to help raise awareness about an illness that's often misdiagnosed (as discussed at length with various members of the EB team), and then ended up getting misdiagnosed by the consultant live on national TV, despite the fact he knew it was IC. And to make it worse, he suggested it was behavioural. 

It felt like my whole life came crushing down around me - weeks of nerves, just to be misdiagnosed in front of the nation, despite the fact I had told them I was already disagnosed with IC in my application form, he'd written down in my notes that I definitely had IC before the show, and had already apparently created a treatment plan for me that treats IC. But no, while live on air, IC was not mentioned once, instead he said I have an overactive bladder - something I specifically said in my notes that I have previously been diagnosed with but it was ruled out very quickly when the treatment made me worse - and the fact it is so different from IC! That I might have infections - the main way IC is diagnosed is because there are symptoms like those from reoccurring bladder/kidney infection but there are rarely actual signs of infection. And even a year later I still can't think about the fact he suggest it was behavioural.

It took so much not to sit and cry. I was still at the laptop connected to a mic with 2 members of crew around me, and even they didn't know what to say because they knew the reason I went on and knew how angry and upset I was that the complete opposite had happened. I've suffered from IC since I was 4 years old, but it took until I was in my 20s to get a diagnosis, constantly fighting with doctors to get hospital referrals/anything stronger than paracetamol because they just wouldn't listen when I was trying to explain the pain was so bad I couldn't physically get out of bed. After years of being made to believe the pain was in my head, someone saying that to me live on air was a huge slap in the face and something that will stick with me for a long time, even if he wasn't specifically relating it to my condition  (which he couldn't have done considering he didn't even mention IC). Living in pain every day is definitely not something I'd do by choice.

Then came the 'hour long' consultation with the specialist, which was more 10-15 minutes as he was 'very busy'. The first thing he said on the phone was that it's obvious I have IC. I had to laugh to stop myself from crying. I asked why he said overactive bladder on the show, and he said he had to keep it general for the public, completely defeating the point of why I went on the show in the first place. I'd told every person I spoke to I was okay being televised because I was happy to raise the profile of the illness, nobody ever once mentioned they'd be keeping it simple and not actually talking about the illness I went on about. He did then go on to suggest various treatments I haven't tried before, so I was looking forward to bringing them up with my urologist to see if he agreed with any of them.

I hadn't taken any notes while on the phone, because I was told I'd get it all in an email and I wasn't sure of the spelling for many of the longer names he'd listed for medicine recommendations. The email I got was THREE LINES long, very general and only mentioned one medication. The first thing it said was that infection may be the cause of flare ups - something that just isn't present with IC! To be completely honest, if he believes infections are the cause of my flare ups (even after specifically telling him on the phone my tests have always been negative for UTIs) he could not have researched the condition that greatly, as there are a wide range of causes for flare ups beyond infections - which is a very rare cause!) This left me with very little faith in his knowledge of the illness, and made me appreciate my specialist even more. The email also mentioned considered other types of bladder instillations, something I told him on the phone made me worse and I wouldn't try again, but didn't actually mention which types making the advice very unhelpful anyway.

They apologised about how upset I felt after my experience on the show, said they'd listened back to it and the specialist didn't imply my IC was behavioural, but instead was a general comment about the condition. Everyone I know that watched the show saw my reaction when he uttered the word behavioural, and also saw it very differently to just being a general comment. And I wasn't upset that he'd suggested my personal experience with IC was behavioural (because I know for a fact it's not), but more even just associating that with the illness at all, even though it wasn't mentioned by name until after the call when Dr Christian mentioned it at the same time as cystitis - which is a massively different condition.

Even a year later, I'm just as angry as I was at the time. An illness I wanted to highlight as it's often misdiagnosed, ended up being misdiagnosed by a professional that was well aware of my condition, and I don't think I'll ever forget how that felt. 

Luckily I've managed to get my daily pain levels under control myself, which you can read about here.
The only positive that came from it apart from knowing I can be confident enough to openly discuss my illness, is that the next night while out for cocktails someone stopped me to ask if I had been on Embarrassing Bodies the night before but I couldn't stop to talk because I was on my way running to the toilet - oh the irony!

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