Another slow week for us, but I know I’m very proud of the stories we shared this week. We’d like to thank Mike at quiltingqueer.tumblr.com again for sharing his experiences as a young adult with a cane. Okay, if you missed ‘em:

1. Disease On My Sleeve Ambassador #4: Shannon - Three congenital heart defects pose quite the challenge, but Shannon’s have inspired her to raise awareness all across Australia.
2. “So…what’s the cane for?” - ”I know that I don’t like to use my cane specifically because I will get lots of stupid questions. Some days even when it would be smarter, I don’t, simply because I know of what I would face. That’s not the kind of world we should live in.”

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Hey guys - today, we’re really thrilled to share a guest post from Mike at quiltingqueer.tumblr.com. Mike lives with several invisible conditions, including fibromyalgia and POTS. Fibromyalgia is invisible - but a cane is not. Here, Mike reflects on the challenges of attending college as a young person with a cane - and gives some great advice about the right way to ask someone about their mobility aid.

So…what’s the cane for?

I have a cane some days, and some days I don’t. And for whatever reason, this seems to be the most baffling concept to pretty much everyone. Maybe because they don’t live with chronic pain or have never met someone with fibromyalgia. Whatever the reason, everyone who has never seen me with a cane before asks me what happened. EVERYONE. The lady who works at the cafeteria who I talk to for maybe ten seconds a day, some of my classmates whose names I still don’t know, the librarians, people in the elevator with me who I have never even met before. Maybe they are hoping for a great injury story, I don’t know. Because I have to make a speech that is shorter than about ten seconds (everyone picks the most inconvenient times to ask), I just say that I came broken and some days I am more broken than others. It works, and it’s shorter than “I have fibromyalgia!” then getting a blank look and having to explain.

So, this is in essence, a message to all of those curious folks out there. Please don’t ask me about my cane unless the amount of conversation time we’ve had adds up to more than fifteen minutes or so. I assure you, you are not the only curious person and even though you assume you are the MOST IMPORTANT of all curious people, I am going to have to answer this question all day. From everyone who assumes that they are the most important curious person. And it’s not that I don’t want to tell you. Because I don’t mind explaining fibromyalgia and other things that go along with needing a cane, but sometimes, I want to feel like I’m normal. Even though I can’t always stand upright without my cane, even though sometimes it hurts to walk without it, even though sometimes I use it because my POTS is acting up and I need it to not fall over, I want to feel normal. I want to feel like there are more reasons to talk to me than just to find out why someone who looks younger than you has a cane, and having people come up to me just to ask why I have a cane is not going to help that.

If you have read this and STILL want to ask why I have the cane, then please don’t ask at bad times. While I’m going anywhere is one. I don’t want to stop and explain. Because it might not look like I’m in a hurry due to the snails that are passing me by, but I am most of the time. It takes me longer to get places and sometimes I still forget that. If we’re headed the same place, that’s fine, just don’t expect me to speed up to keep up with you. Another particularly priceless one is while I’m getting my food from you and there is a massive line of people behind me. The people behind me are already mad that I am holding up the line with my gimping, I don’t really have time to sit here and tell you a story. Any time I’m departing from a bus, entering a bathroom, or otherwise departing your company is another one. I’m leaving. I have places to go, things to do, needs to take care of. Some acceptable times include chatting over dinner, chatting waiting for class to start. Really any time we would have an extended conversation, as long as it wouldn’t keep me from sitting.

Not everyone will be so patient in explaining to you why they need a mobility aid or other obvious thing for their disability. It’s really just better not to ask, until you know them better (and I mean way better). Their body is their body, and having something wrong with it doesn’t suddenly make it public property. If they want to explain, they will probably tell you. But for the most part, needing a mobility aid isn’t something that is worth pondering for them. They need it, they use it. I know that I don’t like to use my cane specifically because I will get lots of stupid questions. Some days even when it would be smarter, I don’t, simply because I know of what I would face. That’s not the kind of world we should live in. If it makes someone hurt less, if it makes it easier for them to get around, then they should be able to use it without fear of getting asked all kinds of questions. So go ahead. Ask why I have my cane. I just might ask you why you have legs. It would make for a nice change sometimes.

This week, we’re introducing our fourth Disease On My Sleeve Ambassador  - you know the drill by now - an individual who exemplifies positivity while living with and raising awareness for a chronic, invisible medical condition. This is Shannon, 19.

Like previous Ambassador Jaden, Shannon is a proud advocate for HeartKids Australia, an organization that works to support the 32,000 Australian children and teenagers currently living with heart disease.

Shannon enjoys reading, writing, theatre, going to the beach, bike-riding, and raising her adorable cat, Kiera. All these despite having three congenital heart diseases (CHD) - Congenital Ischemic Heart Disease, Ventricular Tachycardia, and Exertional Syncope.

Shannon:

I was born 6 weeks premature, at 1.6kg and 36cm long. The doctors discovered that I was born with Ischemic Heart Disease, which is almost always seen in people ages 30+ from coronary artery disease. For me, it’s a lack of blood supply (and therefore oxygen supply) to the heart, which makes me either really pale, blue or red.

In 2008, I was diagnosed with Ventricular Tachycardia and Exertional Syncope. VT is a rapid heartbeat over 120 beats per minute for at least three consecutive beats. Because of this, I cannot play much sport or play it for very long. ES is fainting due to too much strenuous activity. Because of this, I am not allowed to go to Outdoor Education camp as the teachers don’t know what to do if my heart fails.

Shannon gives presentations in schools across Australia explaining Congenital Heart Defects / Diseases, their effects, and what we can do to help. Moreover, she wears a HeartKids badge on her top at school, so others will approach her and ask about it. It’s one thing to speak about your disease at formal events, but to allow and encourage it to come up in daily conversation as a means of raising awareness is another entirely. Think about it: a tiny badge can start a small conversation that can encourage a whole lot of change. Sparking curiosity in a friend or even a stranger can go a long way, and an informal conversation can sometimes be even more powerful than a formal presentation about your condition.

Shannon hopes to become an ambassador for HeartKids Australia, as this would allow her to raise more awareness and affect a larger audience. Until then, she works in her community and school to raise as much awareness as she can on her own.

I try to tell at least one person a day about CHD’s and how they affect people. At school, I was successful in making HeartKids Australia our charity for the year. I made a speech and told my story and I received amazing support. At TAFE, we had to make a presentation about our lives and I took that opportunity to raise awareness of CHD’s and HeartKids, so another 21 people are now aware.

I’d like the world to know that although people with CHD’s can’t do everything that a ‘normal’ person can, we are just like everybody else. We may spend a long time in hospital or feel too tired to go out, but that doesn’t mean that we don’t share the same interests as you. Our understanding and appreciation for life may be greater than other people’s because we have been so close to death, but we are survivors and we will continue to spread CHD and heart conditions awareness! I KNOW that I can make a huge difference in Australia and the world, and I am really excited about that.

Shannon can be reached on Tumblr at zamella.tumblr.com - if she’s inspired you, let her know! You can also comment below. What do you do to raise awareness in your community?

Shannon, thanks for sharing your story - and we wish you the best in your future endeavors. Your words are inspiring kids and teens one classroom at a time, and we hope many more schools in Australia and the world are able to hear your story.

PS - If you would like to nominate yourself or someone you know to be a Disease On My Sleeve Ambassador, hit up our ask box. We’re always looking for young individuals who exemplify a positive attitude and desire to raise awareness to feature. Thanks!!

Heya,

We’re a little late - and slow! - this week due to some technology issues, but here are this week’s highlights:

1. Challenge #4 - Create a collage - with any media, digital or physical - that shares what it’s like for you to live with or support a friend through a chronic illness. Write, scribble, draw, paste, design on the computer - whatever works for you! Tag your collage (or photo(s) of it) on Tumblr with #diseaseonmysleeve or send to staff@diseaseonmysleeve.org.
2. The Lucky Ones - Inspired by a New York Times article: where does luck factor into chronic illness?
3. How Do You Wear Your Disease On Your Sleeve? - Answer here!

Lots of love,

Sami & Sunny

I’ve always considered myself a lucky one.

The night before my hospital admission, also the night before the diagnosis that would change my life, I cried. I thought I had cancer. I had Googled my symptoms - everything pointed to either Inflammatory Bowel Disease or Colon Cancer. Blood tests had apparently “ruled out” IBD, at least according to my pediatrician. I thought the only option was cancer, and I was scared. I had watched a classmate pass away from leukemia only three years earlier. It’s hard for me to say this now, but I thought I was next.

I wouldn’t find this out until weeks after my diagnosis, but my parents had also sought Google’s opinion on my deteriorating condition. My dad was on business in China at the time. He asked my mom if he should fly home for the procedure that warranted the admission. She said no; the biopsy results wouldn’t come in for a week, and she’d need him to take off work then.

On the night of April 21, 2008, there were a lot of secrets in my house, perhaps even halfway around the world in China. Silent fear. Tears stifled under blankets. Pretending to be okay.

So as I fell asleep, I mentally prepared myself as best I could for the chemo, radiation, and surgery. I remember thinking explicitly that I was falling asleep for the second-to-last time as a “healthy kid,” for when I woke up from the anesthesia the next day, I would be a “cancer kid.” I was only partly right. When I woke up from the anesthesia around 10 am on April 22, I was an “autoimmune kid,” diagnosis severe ulcerative colitis.

Some might say there’s not a huge difference. I will have extra challenges for the rest of my life. I take medications that poison my body and pose risks I don’t usually talk to even my closest friend about. I’ll always be left with uncertainty.

Still, none of that registered for awhile. I thanked God that night when I finally had some alone time in my hospital room. I didn’t have cancer. I wasn’t going to die. I was lucky. I was lucky when I could leave the hospital after just three days. I was lucky when I reached remission - not once, but twice.

I’ve gotten used to hearing about the not-so-lucky-ones. Spencer, 23, Cystic Fibrosis, a few months ago. Paige, 16, Heart Kid, just two days ago. I didn’t know either well - Spencer and I had met just briefly over the internet, and I know only a handful of Paige’s friends. Still, I felt pain.

It seems like a weird question to ask, but why am I the lucky one? why don’t I have to fight for my life?

Two weeks ago, the New York Times published an article entitled “Answers in Medicine Sometimes Lie in Luck,” written by a physician at a prominent New York medical center. It’s subject: where luck and medicine coincide.

These days, medicine is working full time to diminish luck: Our entire research apparatus has set about lifting it from the primal darkness into the bright light of predictability. Scientific journals hum with studies that enumerate various possible dangers to tomorrow’s health: cellphones, left-handedness, your height, your grandmother’s height.

With each new association, however modest, another shadowy redoubt of chaos is overtaken and tamed by the glorious human mind, further closing the distance between cause and effect.

It’s just that we haven’t gotten that far. Apart from the predictable problems that result from advanced age or an already existing infirmity, as well as the occasional spool of bad genes, most of what happens to patients still falls well outside our understanding.

The article itself is really interesting and should be read critically, but what really caught me was a sentence near the end of the article: “For all of us, luck is what we use to explain whatever it is we cannot really explain.”

For my co-contributor Sunny and so many others, medicine can’t explain their symptoms. I may have a diagnosis, but doctors don’t have the capability to justify why I, and none of my relatives, have IBD. They also can’t explain why it affects me and my Crohnie peers differently. More pressing, for the families and friends of Spencer and Paige: Why them? Why now?

I think part of the reason the question “Why me?” has a stigma is because it’s an unanswerable question. In a practical sense, it’s a question not worth asking because it has no clear-cut answer. Sometimes, we still have to ask it - for ourselves, to soften the hard blows.

But lately, I’ve been asking “why not me?” more.

I love you all more than I can say,

Sami

Sorry it’s been a slow week… we’re both having computer problems coupled with midterms, eek! So that being said, we want to work on a feature with you guys. We would like to compile a list of ways to wear your disease on your sleeve. We think it would be great to help people come out of their shell a little bit, and for some people (like me) it’s overwhelming to try and figure out how to start. But handy lists always help!

So, reply here or send us an ask. How do you wear your disease on your sleeve?

Week 6!

To all our old and new followers, thank you so much for all your support. We’re working on a couple of really cool ideas that we can’t wait to share with you all within the next month or so.

In the mean time, have you had the chance to check out these posts from this past week?

1. Challenge #4 - Create a collage - with any media, digital or physical - that shares what it’s like for you to live with or support a friend through a chronic illness. Write, scribble, draw, paste, design on the computer - whatever works for you! Tag your collage (or photo(s) of it) on Tumblr with #diseaseonmysleeve or send to staff@diseaseonmysleeve.org.
2. The Chronic Illness Goody Bag - Life with an invisible, chronic illness is not always a party. Send gifts anyway! We’re each other’s best medicine.
3. Undiagnosed: Excuses - “Does having a diagnosis make people act differently around you, even though your symptoms are the same?”
4. College & Chronic: Stress, Part 2 - Have you ever crossed the line between helping yourself and hurting yourself? I chronicle my journey - involving a lot of failures - to stress the right things in my life. Also check out Part 1 from February.

New ambassador should be coming up within the next week!

Stay well and do good,

Sami & Sunny