Sunday, 11 August 2013

Invisible Illness Problems at LeakyCon

I've just spent the last 4 days having a fantastic time at a Harry Potter conference called LeakyCon (so named because it is run by staff from I'm elated that I managed to survive the whole thing, from leaving York on Wednesday lunchtime through to arriving back there on Sunday evening, without being struck by migraine.

I hope that a large contributor to this lack of migraine is because my new preventative is doing its job but I also know that my own Constant Vigilance in preventative measures was also a huge factor in this.

Wednesday, the first day, involved a 4 hour journey to Leavesden Studios for a special private opening of the Studio Tour. I've never known what it is about travelling which triggers migraines in me (or rather, that lowers my migraine threshold) so it's hard to take preventative actions but I did the best I could and with the tour itself starting at 6pm we didn't finish until 10pm which meant not reaching my London hotel until about 11:30pm - very late for me since I started on the amitriptyline and a regular sleep pattern is also important.

Knowing I'd pushed my luck so much on the first day meant that I approached the rest of LeakyCon as cautiously as possible. Unfortunately, it felt as though LeakyCon made this as difficult as it could for me.

The opening ceremony, I was dismayed to see when I walked in the room, appeared to be standing room only. The chairs had been removed as there wasn't enough space for all of the attendees to be able to be seated for it. This screamed of poor planning and I felt my head pounding harder at just the prospect of trying to stand in that crowd to barely see anything (I'm not exactly tall!)

Thankfully, there were actually some chairs and I'd arrived early enough to find a few of them were still free, but they were off to one side with a terrible view of the stage with lighting equipment in the way. But I was seated thank goodness. What would I have done if there hadn't have been any seats free? How do I explain to strangers with no knowledge of migraine that I need to have a seat to prevent losing the next day or more to migraine?

The opening ceremony itself then contained a very liberal serving of strobe lights and lights which swung about on the crowd so would flash in my eyes. Not great when I was already sailing close to the wind! For the sake of the rest of the conference, I therefore spent the majority of the opening ceremony sat with my eyes closed and a poor view when I did open them.

Had there of been warnings for this light show component, which there weren't, I would still have gone in I'm sure. I just wish they'd think of the fact that no seating and lots of flashing lights are bad for many invisible illnesses.

The conference I then found, was spread over a few floors in the venue: the ground floor, the 3rd floor and the 4th floor. This meant a lot of going up and down stairs between programming and due to the fact that the venue rooms weren't large enough to cope with demand, it meant needing to move in a hurry to be able to get a seat in the room I was heading to. Without a seat, I would be unable to attend the programming but these considerations weren't taken into account at all.

The worse moment in the conference for me though, wasn't the fact that I had to miss both of the evenings of Wizard Wrock because I was too tired, or missing the Ball because I was too tired, it was instead an incident which actually brought me to tears during an event I'd been looking forward to for a year. I was waiting, on my own, for the only lift, as I knew my energy was running very low for trekking up the 4 floors on the stairs. I was told by one of the people running the event that I wasn't allowed to get the lift anymore as they needed to use it exclusively for those with mobility problems.

This hit me like I had been physically thumped in the stomach. I'm the typical English person who is non-confrontational and always follows instructions from the authority of the circumstance, and I almost bit my tongue on this but instead I replied "What about people with other health issues?".

She looked at me and simply replied "You can't take the lift, you have to use the stairs.".

At this, I did then turn around and used the stairs, and it was the climb which brought me to tears. The fear that this was the final straw which would cause a migraine to ruin the rest of the conference, and the physical difficulty I was feeling in my umpteenth journey on these stairs. I blocked the stairs substantially as I had to take the climb so slowly and those coming behind me found it difficult to overtake for others coming down.

This just left me feeling so frustrated at having an invisible illness. Was it not enough that I had to miss out on highlights of the conference programming (the evening events) as well as having to miss programming I wanted to go to because I just needed to take a hour or two to rest as going from session to session was exhausting me? Was it not enough that I had to purely listen to most of the opening ceremony and constantly have to be aware of my threshold levels throughout the conference to be able to make it to what I was capable of managing?

I felt marginalised and frankly trodden on during an event which should have been a highlight of my year, and I felt this was mostly because my illness is invisible and because people don't understand migraines, as I didn't before I became a sufferer myself.

I have to say, it was poorly set up for the wheelchair users too, who had to state in advance their plan of sessions for the day as so many rooms had stairs so that porters could pick them up and put the ramps down for them in the various locations, which meant they had no flexibility in changing their plans and they often arrived late for programming too.

I wonder if events like this should ask for any relevant health information when you register so that they can ensure that those with illnesses they can't see, as well as those they can, aren't treated poorly for it being invisible.


  1. I'm sorry the event wasn't what you imagined it'd be :( That lift incident is terrible! You're awesome for still making it up the stairs, I'd probably just leave. The gall some people have. Unfortunately, I know how difficult it is to explain migraines to someone who doesn't even care. Well hopefully it wasn't an entire waste of time for you.

  2. Dear Daisy, as a fellow migraine sufferer (who spent most of yesterday in bed...), I can really feel for you. When you're feeling more rested, I think I'd drop the organisers + the hotel an e-mail - they obviously are not experienced in these type of events and it is really unacceptable for them to take so many bookings that there was standing room only. They need to be made aware - if only for future events. I organise events at work using hotels + conference centres and we have staff who can't eat certain foods etc but I always check things like this in advance, so there is no excuse from either the hotel or the organisers. Often these people are only too happy to take our money!
    We know, only to well, that people who don't suffer from migraines, have no idea at all what it's like but I think you did amazingly well to cope with all that and be ok. Hope your have a good week,

  3. Thanks for your comments Bara & Ellen.

    Please don't think that I didn't enjoy LeakyCon, I had a great time at it. I just had a great time *despite* these problems. As much as I hate that I have to miss out on things because I have to take it easy, it was frustrating to have more than just that to contend with and it worsened the experience for it.

    I will be contacting LeakyCon as you suggested Ellen, but they don't tend to be very good at listening to feedback in my experience sadly.

  4. Hi Daisy, I find one good + effective way of making companies + organisations sit up + take notice is to put a comment on Twitter. Of course one needs to be careful of what you say and word it carefully! I posted a comment on Twitter about the good service we'd had from Virgin Trains on a journey from Birmingham New Street up to Edinburgh Waverley back in May. Instantly I got a reply from Virgin asking me exactly when we travelled and thanking me for taking the time to post the comment - unlike London Midland who seem to have no idea how to run a train service and never, ever reply! I'm just about to contact the hotel we've used for work for a recent conference, just had their invoice in with cancellation charges on it - yet at the time of booking, no mention was made of any cancellation charges. So it will be interesting to see what they say - they've probably already lost an future business just by doing this! Have a good + migraine free day, love Ellen x