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What it's like gaming with chronic pain, and why I fear the future

I have a condition called Ehlers-Danlos Syndrome.

It’s a connective tissue disorder that causes chronic pain and fatigue, frequent joint dislocations, visual problems, poor mobility and a whole plethora of other problems, each affecting my life in huge ways.

I struggle walking more than short distances, I’m always in fairly severe pain even if I’ve not done anything to cause it, and I’m always exhausted. I’m one of the luckier ones too, as I have Hypermobile EDS (also known as Hypermobility Syndrome). The average life expectancy for someone with Vascular EDS, a more severe version of the disorder, is somewhere in the forties, as it can cause major blood vessels to rupture.

EDS can be an invisible but limiting disability. I wear joint braces on the days I know I’ll have to do more walking than normal, and on days where the pain is particularly bad I’ll either walk with crutches or just consign myself to a day of being unable to move.

EDS can be an invisible but limiting disability.

Despite this reality, you wouldn’t be able to tell that anything was wrong just looking at me. It can be difficult to talk to people about the difficulties I face. We’re used to disabilities coming with visuals, and it can be hard for someone to understand that you can look healthy while wondering if you’ll be able to move the next day.

EDS has throws obstacles between me and my enjoyment of games. The ever-shifting trends in game design, and the introduction of new hardware, constantly threaten to push me out of a hobby I love. I want to both shed some light on the problems I face, and also share resources of those aiming to improve mine and others’ gaming experience.

Difficulty at a Cost?

Most people know the basics of making a game accessible for people with disabilities: allow for key remapping and controller support, maybe add a color blind option and there you go: you have a game that is minimally accessible for most people. Despite that, the pain and fatigue associated with my EDS put me at odds with the core design of many games, even when that effort has been made to be accessible.

I find RTS games to be tremendously fiddly and difficult to control thanks to my poor fine motor skills, and the repetitious clicking found in Diablo or Torchlight can be painful. However, there is one game that has always stood out as being almost aggressively inaccessible because of my disability, and that game is the widely adored Dark Souls.

dark sould dies

Dark Souls is meant to be difficult and unforgiving. It’s meant to not hold your hand or cut you any slack, and that is part of why so many people enjoy it. It is a single element that design that conflicts with my EDS, and that is the inability to truly pause the game. Opening up menus doesn’t stop enemies from advancing, or status effects running their course, there is no pausing in Dark Souls.

Ehlers-Danlos Syndrome means I can’t perform complex movements for long before the pain gets worse, and playing games can be incredibly intensive on my hands. After twenty or thirty minutes of play, I need to stop, stretch my hands, and do something else for a bit.

I can’t play for the extended periods of time Dark Souls sometimes requires, and so my choice is either put up with physical pain, or simply not play. I am playing entirely on the game’s terms, and the game just doesn’t care about the player; the game’s fascination with being challenging and ‘hardcore’ are almost at the expense of my condition and prevent me from appreciating the game in the same way many other people do.

What is utterly frustrating to me is other games have featured elements of the Souls games before, and still been able to offer the basic pause function I need. Dante’s Inferno’s ‘true’ pause menu is different from its items and abilities menu. If this was applied to the Souls games, there would be the balance of juggling your inventory that is important to the difficulty, while also giving the player room to breathe if they need it. And if anyone needs that room to breathe, it’s me.

Watch Dogs and Dying Light also both allow for the game to be paused at any time, unless you are being invaded by another player. Invasion is a mechanic the Souls games popularized, and yet other games have improved upon it. I’ve been racking my brain trying to find an acceptable reason as to why you can’t pause in the Souls, and I just can’t find one.

Of course, this isn’t a problem exclusive to the Souls games. The lack of a pause in the majority of multiplayer games puts me off of playing them, and MOBAs such as Dota 2 or Heroes of the Storm are often a bigger commitment than my hands would allow me.

The difference is that Dark Souls’ absence is frustrating without justification: the game removes such an important feature to me. It’s something other players may rarely even consider, but being able to take a quick break is vital for my enjoyment, and it is completely absent to continue the trend of difficult and unforgiving games. Many people enjoy it, but it prevents me almost completely from being able to play.

It could be argued that Dark Souls simply wasn’t made for me, and that it would be unfair to expect From Software to make adjustments just for my sake. While this is true to an extent, the Souls series has inspired some sizable changes to the way games are designed.

The previously mentioned Watch Dogs and Dying Light borrow the series’ invasion mechanics, Lords of the Fallen is heavily inspired by the series, and its influence can even be felt in recently released indie titles such as Grimstorm. The fear isn't that I'll have to pass up a few games a year, the fear is that some aspect of gaming that is incompatible with my needs becomes the dominant force in gaming.

dying light invasion

To not discuss and question how the Souls series influences other games just because ‘it wasn’t made for me’ would be to disregard the effects a potentially massive shift in design ethos have on disabled people like myself. Dark Souls will never be for me, and that is okay, but I would like to make sure the elements that aren’t for me are improved when applied to other games. I don't need to be served first, I'm just hoping to have a seat at the table.

The Grim, Dark Future of VR

It’s not only the games themselves which can be inaccessible to me. Over the past decade, we’ve had a lot of new technology come and go, that’s introduced big challenges for me because of my disability.

Look back six years: the Wii was massively successful, and Microsoft and Sony wanted a piece of that pie. At E3 that year, Microsoft unveiled Project Natal. While we now know it was the Kinect, the Natal caused a lot of anxiety for me. People running, jumping, waving and flailing to play their games? There was no way I would be able to do that when simply going for a walk one day will put me out of action for the next three. Fortunately, the motion control trend died down – the Wii U didn’t continue what the Wii started, and the Kinect failed to get the support behind it that it probably needed.

It stinks to have to almost cheer against the adoption of certain technologies, but from my point of view it's like watching your friends vote on which restaurant to visit for dinner knowing that one of choices will mean you're staying home. You don't want to call attention to yourself and ruin anyone else's fun, but you also don't want to be left out.

But we’re now entering a new age of tech that I also can’t use: virtual reality. As a result of my eyes being weak due to Ehlers-Danlos, I simply can’t use VR headsets. I’ve played with the Oculus Rift before, but instead of being transported to a new world like it makes itself out to do, it simply felt like I was sat in a dark room with a big screen. That experience that is considered to be part of the future of gaming just does not work for me in any way, and that does scare me.

You don't want to call attention to yourself, but you also don't want to be left out

With the Rift, Project Morpheus and the HTC Vive all vying for competition, I am sat here hoping they won’t be the things to push me out of the hobby. I’m expecting them to become more of a side-show to gaming in much the same way that building high-powered PCs or hardcore train simulation are, but here I am again hoping for technology to not be adopted so I can continue to enjoy a hobby I love dearly.

Of course, as the technology becomes more popular it is possible that adaptations will be made for those who can’t use them. It’s happened for almost every other bit of gaming technology, and so it would be unreasonable to assume the same won’t be true for VR. Maybe there will be ways to emulate VR-exclusive games on a standard monitor. Polygon's Ben Kuchera suggested I may have better luck with different models of the hardware or things like the Gear VR.

Maybe the more widespread popularity of curved and flexible screens could present opportunities that  will allow me to continue playing those new releases. The future of VR for the majority of people is incredibly bright and exciting, and rightly so. I just hope at least one of the headsets will allow people like myself to enjoy the games as well.

But the concern is still always there in the back of my mind that one day my body will be incompatible with the technology we need to use to play games because nobody thought of people like me. Be it the mobility for motion controls, or the visual ability required for VR, or something we haven’t even thought of yet that will throw a curveball, something could come along and force me out, and that’s scary.

Nintendon’t Work for Me

Less in the realms of speculation, I have had tremendous amounts of difficulty with handheld and mobile gaming — specifically my New 3DS XL.

As could be assumed from my adventures with VR, the 3D feature simply does not work for me. The function assumes the person looking at the screen has two adequately functioning eyes, and so all I can see is a rapidly flickering image. Thankfully this is only a minor problem, the 3D functionally is completely optional and I can’t see the technology used getting much widespread use. The shape of the console itself has been a much bigger problem for me.

I have dislocated my thumb before in an attempt to play Monster Hunter 4

Not only for the sake of a bigger screen, the 3DS XL is designed to be larger than normal for big ham hands like mine. Unfortunately its design doesn’t take into account the thinness of the device and how someone with faulty joints might need to hold it.

Holding my fingers at the uncomfortable angles needed to simply to press the face buttons or use the second stick can be incredibly painful. I have dislocated my thumb before in an attempt to play Monster Hunter 4, but cramping and numbness are more common outcomes of my playing sessions.

This problem also affects my involvement in mobile gaming. My phone is a Motorola Razr I — a fairly old Android device with a larger screen. Even with the larger screen, I struggle greatly with playing games on it. The phone can grow heavy after more than a few minutes of play due to it being a pretty heavy device. Tablets are easier, and so I use them for android gaming when I need to, however the weight of the device will always be an issue for me.

Fruit Ninja in particular stands out as being a difficult game for me due to how much coordination is needed to play. Coordinating all ten fingers to interact with anything more complex than Flappy Bird on a small touch screen can be a big challenge for anyone, but for me the problem is exacerbated by my poor motor control. Unfortunately, this is a problem that can’t be improved by shells and grips as the issue lies in the interface that will be the same regardless of what device I use.

Do I think this is how the future is going to be? Not exclusively — consoles and PCs will always exist, and there are ways around this problem (albeit imperfect ones). However, some types of games — particularly those found on mobile devices - feel like they are out of my reach right now. The mobile and handheld gaming platforms have always emphasized being open for all to play despite their experience with gaming, and so it feels bad being unable to enjoy and keep up with it because of a disability.

It's not all bad

There have always been games that I can’t play due to EDS, and there always will be. There is probably never going to be a unanimous push to make games more accessible for people with EDS, and so it is up to us to find ways of getting around those hurdles. Fortunately, there are people who are working towards greater accessibility.

There is a fantastic resource for developers who wish to make their games more accessible for disabled people: the Game Accessibility Guidelines. It explains what changes could be made to a game, who they help, and why people struggle without them. I’ve seen this ideals of this guide put in action, and it completely changed my opinion of the game.

Developed by a friend of mine, Quarries of Scred was close to being completely unplayable for me when it first released. The game required lots of repetitive key presses to move even a short distance, and this was incredibly punishing on my hands. This tiny thing which many players wouldn’t even consider really put me off of the game: I could get maybe ten minutes of play before having to stop due to my hands slowly going numb.

But then the developer finally put in a hold-to-move option. Removing the need for the taptaptapping for movement, it saved my hand. I was able to spend more time with the game and less time flexing, stretching and checking my hands, and it allowed the game to grow on me. It’s still the game the developer intended it to be, but a few basic adaptations allowed me to be part of that experience.

My hardware problems are not completely unsurmountable either. The work charities such as AbleGamers and Special Effect do is aimed towards allowing people with disabilities to play games.

When I struggled with my 3DS, Special Effect pointed me in the right direction for suitable grips. While Monster Hunter is still a chore to play sometimes, the grip has allowed me to at least enjoy it for a while and let me play other games on the 3DS. It’s by no means an ideal solution, but the fact there are organizations who know of these resources and can support disabled players is incredibly important.

3ds grip

These organizations’ roles may be even more important in the future as our technology gets smaller and more involved, those of us with disabilities may struggle in new ways, and so having experts such as these able to figure out and work with developers on how to overcome the hurdles progress will throw up is essential.

Accessibility is an incredibly important part of gaming. The more people able to play games, the more our industry and grow and advance. But at the moment, those who need it the most may also the ones who aren’t in the position to talk about it.

We’ll never be able to change every game so that every person can play it, and there are some design decisions that the developers may feel are worth losing a portion of the audience. That being said, a few changes here and there can mean more people can play more games without sacrificing the core design principles of the game. By choosing your battles you can make a lot of gamers happy without a huge extra cost to development.

If we don’t improve, we could lose a huge, important part of the gaming community.

If you want more information about Ehlers-Danlos Syndrome, please visit the EDS UK website.