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The Struggles of Living with an Invisible Illness Like Migraine

Reading time | 7 mins

I talk about migraine so often with people that it’s no surprise that my friends and family see first-hand the impact that the condition has on my life. When I’m in this bubble of people who know me well and love me, I feel like my chronic illness is visible. And I think that’s why it hits me so hard when I am reminded that to others, migraine is an entirely invisible illness.

In the UK, where I live, a disability is defined under the Equality Act 2010, as someone who has “a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on their ability to do normal daily activities”.  Ever since I have lived with chronic migraine, I now fall within this definition. After some soul searching and a discussion with my migraine specialist nurse, I have identified as being disabled for the last five years or so.

The invisibility factor on public transport

There are many things that must be managed to lessen the impact of migraine on my life. Sometimes these things also require concessions or allowances from other people. If my disability were visible, I believe I would receive this. But as my condition is invisible, I am often ignored and treated poorly for even asking for help.

Many people who have been fortunate enough not to encounter invisible illness and disability in their lives or in the lives of the people close to them, often assume that being disabled means you must have to use a wheelchair. After all, the universal symbol for ‘disabled’ is a picture of a wheelchair and most disabled people have wheelchairs, right? Wrong.

In the UK, Transport for London have recognised a need for those living with invisible illnesses and disabilities when using public transport. They realised that people with unnoticeable conditions often suffer when they are unable to get a seat on public transport. As a result, they implemented a scheme that allows you to apply for a badge and a card that asks other people to offer you their seat. In no way does this guarantee that someone will give up their seat, but it does at least give invisible illnesses and disabilities some much-needed visibility.

I have one of these badges for when I travel into London, but I only use it when I feel like standing up is going to trigger a migraine. Of course, that’s very difficult to judge this and I have got it wrong in the past. Then I inevitably end up feeling bad about making my invisible disability, visible. I think the feeling comes from thinking that I have to explain to people why I need a seat, although I technically look perfectly ‘fit and healthy’.

Explaining why I need some form of concession hasn’t always gone well for me.  A lot of people can’t get their head around what physical exertion could possibly have to do with migraine - when actually, it’s a big trigger. This is usually most apparent at the events or conventions that I go to.

Lack of reasonable accommodation at events and conferences

When I go to an event - in particular conventions that last multiple days – a migraine is far more likely to be triggered because of the break in my routine. I don’t get the rest I need, I don’t eat at regular times, and I’m often unable to keep myself as hydrated as I usually do. Sometimes, it even feels as if an event is working against me!

One particular fan convention I attended in London a few years ago really stands out for me. After queuing outside for hours to get registered, I was relieved when we were finally allowed in for the opening ceremony. However, we soon realised that it was standing room only because there were more attendees than planned. Luckily I managed to get a seat at the side of the hall, but then I could barely see the stage for all the lighting equipment. I felt like the experience for anyone who needed to be seated was either not considered, or simply not thought to be important.

When the ceremony finally did start, it contained lots of strobe lighting (that we weren’t warned about) that shone across the crowd and flashed into my eyes. Of course, everyone’s migraine triggers are different but photosensitivity is common among many people who live with the condition, and is particularly problematic for me.

Consequently I spent the majority of the time with my eyes closed and covered just in case. With no warnings, accommodations or considerations, I had never felt quite so invisible before.

I wish I could say this was the only event that I’d felt like this, but I’ve also had a bad experience at another conference. Attending various sessions required delegates to go up and down between levels… a lot. Most of the sessions I attended didn’t have enough seats, so I felt really pressured to get between rooms as quickly as possible to ensure I got one.

On one of the days, my energy was running very low. Despite having avoided all the evening events to try to prevent a migraine attack, I could feel I was on the cusp of one. I needed to get from the ground floor to the fourth floor so I opted for the lift. There was only one lift and I was the only person waiting for it, but an event staff member approached me and told me I wasn’t allowed to use it.

They said it was exclusively for use by people with mobility problems.

This hit me like a punch in the stomach. I was struggling so much and desperately trying to manage my symptoms, yet told that I somehow didn’t qualify to use the lift? “What about people with other health issues?” I asked, but she simply looked at me and said, “You can’t take the lift, you have to use the stairs.”

I was exhausted and it felt like my brain was swimming, so I was unable to argue. Instead I started climbing the stairs and began to sob as I slowly crawled up them. Having been brought to tears at an event that I had been looking forward to for so long was a low point. To make matters even worse, the stairs were only wide enough for one person to go up and one to go down, so it meant I was holding everyone up behind me. 

Reflecting on this defining moment

That conference was one of the most defining moments of my life with chronic migraine and it underlined the difference between invisible and visible illnesses and disabilities. If that member of staff had been able to physically see my disability and see how adversely I was affected when I was forced to use the stairs, I daresay they would have allowed me to use the lift.

What feels even worse is that they were probably implementing their draconian ruling in the full belief that they were helping people with disabilities. They probably went to bed that night feeling good about how they had improved the convention experience for attendees with disabilities, with no idea how much they worsened it for at least one person in the process.

I realise that not all events are so poorly set up for people who live with an invisible illness or disability, but it is still an issue at almost every event or convention that I manage to go to. I feel lucky that the invisibility of my disability means that I can go through life without people just seeing me for my illness – something which I can only imagine is difficult for people who do live with visible disabilities. 

However, the invisibility means that a lot of people think because they can’t see it, it can’t be much of a problem and that I shouldn’t complain. Equally, I feel like it means that I can’t ask for any concessions – like a seat on the train – because I don’t want to go through the humiliation of explaining my chronic migraine condition. For all I know, that person could be one of those people who think that migraine is “just a headache”.

Continuing to raise awareness of invisible illnesses

If, like me, you live with a chronic condition that is invisible I think the only thing we can realistically do is to talk about our experiences more. If we do that enough then hopefully people will start to listen and understand, and hopefully this will make things easier for us. After all, some things have already gotten better, like the ‘Please offer me a seat’ initiative from Transport for London that I mentioned earlier.

I always give feedback after an event when the option is given, but what we really need to do is to raise the awareness of invisible illnesses and disabilities with the general public. As we continue to do this, hopefully more people will try and understand that we need a little more help sometimes.

UK/MED/19/0213 September 2019