Sept. 30th, My Visibility Day

As a person with an invisible illness/invisible disability, I often get funny looks when being visibly disabled in public.  We have all heard stories of the notes left on cars parked in handicapped spots claiming “where is your wheelchair.”  I have often wondered if I needed to start wearing a sign in pubic to get any respect.  I already developed some print-at-home cards to hand out to the particularly uneducated, but most people are not bold (read: RUDE) enough to question me openly.

On the days that I can function–at least to the average viewer–as a normal person I often wonder how many people around me are doing the exact same thing.  I look no different than any other person on the street, but only because they cannot see the hundreds of things going on in my body and behind the scenes to make me appear that way.  How many people do I pass on the street that are fighting a battle like mine, putting on a facade like me, to get though the day.  According to the statistics, one in five in the US has a disability– so I probably pass by several everyday, none the wiser

So September 30th, 2016–the Friday of Invisible Illness Week–is going to be my Visibility Day.  The day when I walk around with a sign on, or at least what most of use as our own personal billboard–a T-shirt.

As a person with an invisible illness, Invisible Illness Week has always had a spot in my heart.  Whether it is an invisible physical illness/disability, invisible mental illness/disability, or invisible learning disability, many of us struggle for the recognition and validation of what we go through.  It is one thing we have even common, even if how it affects our lives is completely different.  A week where we can come together and share our struggle together, even if it is the only struggle we share.  It is entirely possible I am the only person in my small town that struggles with dysautonomia, but I seriously doubt I am the only one that struggles with an invisible illness/disability.

So I want a day where I wear the struggles of my life on my sleeve–literally.    I plan on making a shirt with my conditions listed on the front (Dysautonomia & Endometriosis), probably using a hashtag, (cuz we live in a twitter world) and in the color of Dysautonomia since I feel it has the most affect on my life.  On the back, I plan to put “Dont judge a disability by its visibility”.

And I encourage anyone else who wants to have their own visibility day to join me.  Make your own shirt, or wear an awareness shirt you already have.  Make you own on a site like cafepress or zazzle.  Buy iron on letters or the print and iron t-shirt kits.  Heck, take a sharpie to a goodwill shirt.

Whether you have Dysautonomia, Depression, or Dyslexia.  Whether you have Autism, Anxiety, or Angina.  I hope to see you repping your colors and your conditions on September 30th.

*Note-While not all invisible illness are an invisible disability, and vice versa, there is a lot of overlap. So for the purpose of my visibility day, I am including both of them.

 

Invisible Illness & Invisible Disability Signs

For those who follow my blog, Pinterest, or Facebook page, you have probably already seen these.  When I first had the idea to create some home-printable business cards for awareness, I wanted something that got the point across that even though I look fine, I have a disability.  The wheelchair, of course, is pretty much the universal sign of disability.  The problem is, I do not often have to use a wheelchair.

On my worst days, yes, I may need a wheelchair.  Other days, I may use my rolling cart with a seat.  Still others, I may be perfectly fine just walking by myself.  Dysautonomia is like a box of chocolates, you just never know what you are going to get–it can vary from day to day, hour to hour.

However, that reality does not fit well in to  society’s perception of disability.  You either are or are not disabled; no one believes it can be a transient state.  Yet for millions of those with chronic illnesses, it CAN be a transient state, or at least a varying one.  People don’t understand why one day you can be at Nordstroms shopping like a normal person, and the next day at Walgreens in a wheelchair.  And without one of the universal signals that conveys a reason for needing assistance (e.g. grey hair or an appendage in bandages) one is likely to get strange stares at best, and nasty comments at worst.

At one point, I was actually considering buying a walking cast to wear when I felt I needed to use a wheelchair or mobility cart at the store.  If I was wearing one of those (despite the fact I did not actually NEED it) I was unlikely to be bothered or questioned.  I never did buy the walking cast, mostly due to the expense, but also because I felt I should be strong enough to defend myself and my invisible disability.  Yet I found myself just avoiding leaving the house all together; the thought of possibly having to deal with mean, ignorant people while also feeling like crud was just too much.

Thus, began my search for an image that conveyed that though I look “normal,” I have “unseen” issues that affect my abilities.  I did not want something sarcastic or confrontational, even though I could definitely identify with those sentiments.  And I did not want to go into too much detail about my particular condition.  I wanted something professional, quickly identifiable, and universal.  Because, sometimes, I just don’t feel like explaining my entire medical history since no one has ever heard of what I have.

Best I can tell, there does not seem to be any universal symbol of invisible illness or invisible disability.  There are some for individual situations–such as hearing impaired or blind–but nothing for a general “my body just does not work right.”  I really like this one:

But A) the image was intricate enough it did not work well as a small image on a business card and B) it still used the wheelchair, something that not everyone with invisible illness and disability uses.  Thus, I made my own.  Working with symbols that already had widely known meanings, I decided to put the Rod of Asclepius (not to be confused with the Caduceus) into the widely used signs for Man and Woman.  I probably could have just used the Man symbol, as it seems to be the default, but as a woman with an illness that most often affects women, I just kind of liked the idea of a gender specific one.

I spent a lot of time trying to decided whether to use the Rod of Asclepius or something else.  I even focus grouped it on a couple of my chat groups.  While not all invisible disabilities are thought of as “medical” in the same sense that most invisible illnesses are, it seemed to me that a lot of them were at least biological in nature.  Thus, I felt that Rod of Asclepius was the most representative symbol that was widely recognizable.

So, a little paint action later, I had my symbol.  I made one for both Invisible Illness and Invisible Disability, as I know some with chronic illnesses have issues with the “D” word (I know it took me a long time to embrace it).  I made generic ones, both man and woman.

And later made versions that also include mentions of specific conditions so I could continue to raise awareness for both my condition and invisible disabilities/illnesses in general.

I keep the ones I have made on my Pinterest page, and have posted a few of them here.  While I don’t ever expect them to receive wide-ranging recognition, anyone who wants to is free to use them in hopes of conveying their situation to others.  They are available free of charge for personal, non-commercial use.  Any other uses, please contact me first.

Also, if you are interested in a sign with a disease or condition not already available on my Pinterest page, please feel free to message me or comment below, I would be happy to make it for you.

Dysautonomia Educational Business Cards

Ok, so I have been super MIA for the past year.  Ended up trying to go back to work, but that did not go well.  I am now back to not working while trying to get my symptoms and my life back in order.  However, the extra recliner time has given me a chance to get back to my blog and back to some other projects I have wanted to start.

One of those projects I have been working on is a business card that I can hand out at times when people are curious (or, let’s face it, sometimes downright mean) about my limitations.  People have a hard time imagining that someone under 30 could have an illness that leaves them with significant limitations, but still look perfectly normal.  It is the bane of the Invisible Illness crowd—“but you don’t look sick”.  Chronic Illness Memes abound about how hurtful, dismissive, and downright rude that saying can be.

 

(Sorry for the blurry pics)

Yet, I hear a story at least once a week–via the news or in my chat/Facebook groups–about another person with invisible illness or invisible disabilities being accosted for parking in a handicap spot (with a legal placard), using wheelchair or mobility carts at stores, etc.  It is a tough spot many of us will find ourselves in a one point or another.  While I am lucky that all of my inquirers so far have been kind and curious, I have caught the judgmental stares on the faces of others.  I know it is likely a matter of time before someone confronts me in a not so friendly manner.

When I imagine this likely confrontation, I can envision two scenarios of how I would react.  In the first, I start crying on the spot, or hurriedly try to make it back to the car before crying.  In the second, I get really mad and starting yelling.  Neither of these reactions are likely to result in positive outcomes, either for the ignorant commenter or my heart rate and blood pressure.

Now, when the inevitable questions come, I hope to just reach into my purse and pull out one of my business cards to give them.  If they are mean, I can hand it to them and walk away—biting my tongue if I have to.  If they are friendly, I can stay and inform them about Dysautonomia/Invisible Illness, yet still leave them with something they can take home and follow up on.    A lot of my life now comprises being prepared for when things go wrong (I keep a Dysautonomia “kit” in my purse at all times) so this is just one more thing I want to be prepared for.

So, below are my homemade business cards.  They are in a pdf for anybody who wants to download them and print them for their own personal, non-commercial use.  I also have them in a Microsoft Word template if you want to customize them to your own particular situation—contact me if interested.

I also have a collection of both Invisible Illness and Invisible Disability signs posted on my Pinterest page.  Will probably end up printing up one of the Dysautonomia Signs as a sticker to put on my wheelchair (also and Avery print at home kit for that as well!) Once again, feel free to use for personal, non-commercial use.

med cards front 2

med cards back 2

 

How to Print at Home Instructions:

These cards are formatted for the Avery Business Card Template 8371.  The kit I used is the Avery White Business Cards 100 count for Ink Jet (28371), approximately $4 at my local Walmart.  I printed them using my personal inkjet printer (aka, these are not professionally printed)

The template comes in a front and back form.  Remove all other paper from your printer and run though once printing the front of the cards template, then flip over and print using the back of the cards template.

This allows me to print 10 business cards at a time.  I prefer this flexibility in case I want to change information on the card at a later date.  It also means I can print a small quantity without needing to engage the services of a professional printer.

Note: The back of the card has a QR code that is linked to the information page of the Dysautonomia International website.  Most smartphones already have or are able to download a QR scanner for free in their respective app stores.  However, those of us still working with “dumb” phones (raises hand) may not have access to it that way and would need to go home and get on the computer.