Wednesday, August 31, 2011

But You Don't Look Sick!

(A couple of recent posts by Beru over at Falling Leaves and Wings have got me thinking. She's been kind enough (and strong enough) to share her journey through multiple doctors and tests to figure out what is going on with her hands. I've felt a special connection to those posts because of my experiences with my own tests and doctors and they inspired this idea.)

My Windrider keeping busy in the hospital.

I've seen a few forum posts about playing World of Warcraft with a disability - whether that be a learning disability or a physical one - and how you may not know who is in your random group. I read a post on the official WoW forum in which the poster described how he was being teased in a random five man for "letting the group die" and how he wished people playing WoW would stop for a second and think about the person on the other side of the keyboard. You have no idea if the person on the other side of that keyboard is a war vet, or someone who can't type properly back to you, or if the person has a phobia and just can't interact.

These posts, along with Beru's continued look at her challenges, made me think about myself and finally write this post that's been in my head for a long, long time.

It's All About Me

I have what is known as Crohn's Disease. It's an inflammatory bowel disease (it is NOT Irritable Bowel Syndrome) and if you were to look at me, you'd never know I had it. On my off days, any problems I have usually occur in the mornings, and I can go about my day like normal. However, the usual problems – the problems people around you notice the most - with Crohn's are increased visits to the washroom. It's hard to gauge how your day is going to be and sometimes no matter how good you feel, you end up doing the washroom shuffle between various activities because your guts just won’t cooperate with your mind. Or you're stuck in the bathroom for an hour or more because if you get up, you're just right back where you started anyway. 

I may be one of the few students who knows where every bathroom is on campus. I can make a mad dash from one class, to a washroom, and to my next class like a champion. I also know a few places I can stop on the way to and from the university while I'm driving.

Crohn's Disease can make you extremely tired. I used to get three-hour infusions every month, and I'd come home and sleep until the next morning. Since I don't absorb nutrients properly, I get tired faster in between meals, so I have to eat multiple smaller meals rather than three big ones. My energy levels tend to spike directly in relation to when I've eaten and how much sleep I've had. I nap at school in between classes because in the past I've fallen asleep during lectures.

Stress triggers my disease, and therefore it's very hard for me to work and go to school. I can't take a full course load, either. Five final exams and projects and all that work makes my heart beat faster just thinking about it. I used to get very, very sick around final exam time and I've missed exams and even had to medically excuse myself from two semesters so far - though I did get credit for four courses in one of those terms.

And of course, there can be a lot of pain. Right now I'm in a stage of recovery from surgery so I'm not experiencing much pain at all. Before the surgery, there was a spot in my stomach where I later found out was a near blockage of the small intestine. That particular spot was very painful, especially after meals, so much so that I'd have to sit, or lie down and do nothing for a few hours. With the pain came a lot of vomiting, since it was a blockage, and when you feel sick you don't want to eat, and when you don't eat you get tired. Lovely cycle there.

A chronic illness is an interesting thing. One day you can be fine, the next you're not - but your appearance (usually) doesn't change. It's not like Chicken Pox, or a broken arm, where you can see the effects of the illness or problem. Chronic illnesses tend to be 'invisible', and the person with it has to deal with it for months, years or even the rest of their lives - there's no cure for many of these (like Crohn's). 

So how does all that fit into World of Warcraft anyway?

While I was writing this, I came across a really wonderful post by Wugan over at Resto Shaman Flow called "WoW as a Refuge". In it he talks about CFS (Chronic Fatigue Syndrome) and how he had to cut back on work because of it. Any physical activity is draining, and he had to slow down doing what he usually did everyday (like mowing the lawn, or even going out with friends). Then he describes how WoW has fit into his life with CFS. 

WoW, according to Wugan, is a way to:

...keep my mind active, to experience a sense of accomplishment, to work together with other people to complete difficult tasks, and to relax and take my mind off my symptoms.  Although my body is tired and my mind can’t concentrate like it used to, I still need to feel challenged and engaged in something, and WoW provides that.

Another blogger I've followed who is very open about her health is Ophelie, author of The Bossy Pally. She occasionally talks about how she has Multiple Sclerosis and how WoW has fit into her life with it. She mentioned once that, "It’s no secret that escapism, and MMOs in particular, is used by many to cope with the limitations life has thrown at them." She even talked candidly about how one of the therapists at her school sent her home "with a prescription of emergency WoW time." Her post Finding that Balance is a great read just like Wugan's post, linked above.

But Back to ME

I found Wugan and Ophelie’s stories to be incredible likenesses to what I experience when I play this game. I related to Ophelie's quote on escapism because when my disease is in a flare, and I can't physically do anything or I just don't have the energy, I stay home. To keep myself from going crazy or feeling too sorry for myself, I'll log on to WoW and farm herbs, or run a few dungeons or level an alt.

This summer I had a long wait between the "You Need Surgery" appointment and the "Here's Your Surgery Date" appointment. Since I didn't want to pick up a job only to tell them that I'd need a month or so off for surgery and recovery, I stayed home and putzed around my house and my neighbourhood. There was a lot of time to kill this summer, and World of Warcraft was where I spent a lot of time. My in-game friends were right there, and I didn't have to go to the trouble of telling them that I couldn't make it because I was too tired to drive out, or that I was feeling really down and didn't want to go anywhere.

Crohn's can be pretty frustrating at times. Earlier I talked about how sometimes you do the washroom shuffle, and WoW is no exception to that concept. It's extremely annoying when I queue as a tank and there's that "Oh shit!" moment (no pun intended) where I have to cancel my insanely fast queue and run away from the computer. I feel a lot of pressure on my tank character to NEVER GO AFK during a heroic. Especially the troll heroics. People are really, really set on having very fast runs - I can't blame them, I hate the troll heroics - and the tank going afk is a no-no. Luckily, I've not been kicked on that character yet or had to go afk during those runs much.

However, going afk between pulls does happen. Once, I even ran afk during a tank n' spank in HoO (it was near the end, so I felt okay about leaving) and continued the run once I got back. I feel really safe when I play a DPS character and have to go afk, since my presence isn't required to move the run forward. I'll also go afk during a DPS queue. Sometimes I miss the queue pop, sometimes I catch it right on time, but it generally gives me plenty of time if I need to go afk - one of the unsung benefits of the ridiculously long DPS queues.

AFK'ing between pulls even happens in raids - usually only trash pulls - but sometimes between boss pulls and this is where it can get tricky. I'm fortunate that I raid with my boyfriend about two feet away from me, so he can run my ghost back to the instance and eat the feast and buff the raid for me. Sometimes he's not around because of work travel, and I'll run myself back really fast, click the feast and book it like a bat out of hell up my stairs to the washroom and back. (Sometimes I'm even ready before other people!)

Hell, I had surgery this summer and had to break from the game for a week or so, but when I got back I used sitting up in a chair as a way to help heal. Walking was a challenge, stairs were really tough, but sitting in a computer chair (while still very tiring) was a great way to speed up recovery.

But You (still) Don't Look Sick

The general statement that I hear a lot, "But you don't look sick!" really applies to the World of Warcraft.  People who play WoW can't see you, and typing doesn't convey the emotion or tone that voice communication could. Unless you were part of my family, and saw me everyday you wouldn't know how stressed I get, you wouldn't know that I lose hair, weight, sleep and occasionally my mind.

If I'm having an off-day where I'm not feeling so great, I'd like to think that my guildmates can't really tell, but I know a few of the people I talk to on a regular basis have started picking up when I don't feel well. Crohn's generally doesn't affect my raiding performance (or, at least I don't think it does) but it does affect my attitude at times: I get frustrated easier, I'm tired during the raid and I'm much less chatty compared to my usual self.

I consider myself lucky that I have WoW as an option for a "getaway" or refuge. WoW lets me escape for a little while from my symptoms, my worries and my stress.

I love my circle of friends outside of WoW. But sometimes they don’t quite understand why I’m not as active with them as I once was. The Spoon Theory is an excellent way to explain to people how hard it can be just to go about your usual activities.

So when I can’t get out into the world, I look forward to chatting on Mumble with my guildmates, many of whom I consider good friends. I love the fact that they're so accessible, and if I just don't feel like going out with my friends to a bar, or a restaurant or a party, I always have the people in WoW to keep me company.

(Special thanks to Jasyla at Cannot Be Tamed, and Sara for proof-reading this for me!)


  1. I know this isn't exactly the same as what you experience, but I'll comment anyway! (I always like when people comment on my stuffs, so I try to on other people's work.)

    Buy any how back at level 60 and level 70 I used to raid with a resto druid for quite a long time. I played through most of level 60 without ever discovering she was deaf. Now being deaf may not pose too much of a problem in normal WoW, but in a very serious raiding guild it can...that means no teamspeak or no vent. She was by far the best druid I ever played with, and taught me most of what I knew before changing to feral. I couldn't believe the fact that we had played together for over a year or more before I even knew she was deaf. She always took it in stride though, and her healer assignments were just done via text. Maybe since she couldn't rely on sound, and vent to keep her on her toes (like aggro warnings, DBM announcements, people calling stuff out) so I actually think she was a better player because of it.

    So I know that was a tangent, but I definitely enjoyed reading this. Thank you for sharing your life with us!

  2. I'm not exactly sure on all the buttons I clicked on to get to this post, but I have to say it was a really good one! I think a lot of people don't care about anyone else in their (Guild/raid team/dungeon group/pug) enough. And that applies to RL issues as well as in game ones, It's really too bad, but maybe this will cause anyone who reads it to stop and take just one second to think before they write "L2P Newb" in chat :)

  3. Thank you both for your comments!

    Merl, that's a great story. I'm not sure what I'd do if I didn't have my audio cues for certain spells.

    Asherrylie, I'm glad you found me, and thank you! It really just takes a second or two for players to take a breath and see what's going on.

  4. How's this for a necro? Stumbled across the Frost podcast, then its archives, and then this post.

    I know where you're coming from. Have had Crohn's for about 20 years now. This spring into summer was the worst. Had an abscess that surgery got rid of but the wound took its time healing. Ended up losing 60 lbs by the time everything wrapped up, including a flare up that occurred a week before my MRI (that I was waiting on to get a treatment decided upon). That week was probably 15 lbs by itself (the other 45 was over about 2.5 months).

    I'm on the mend thanks to some antibiotics (knocked down the flare up) and Humira (long term strategy). It's a frustrating disease with no sure cures or treatments and no obvious outward signs unless you go skeletal. Hang in there and I hope you find a treatment that works for you. There is hope, my hemoglobin is at levels unseen without transfusions. It's working, at least for now. Keep on truckin, k-town :)