Restroom with sign,

Restroom with sign, “This bathroom is disgusting DON’T GO IN!!!”

 

The #DOC is one group I would not advise messing with. According to the CDC, in 2011 diabetes affected 8.3% of the US population. The diabetes online community is massive. It seems as though half my ePatient Twitter friends are PWD (people with diabetes). They have their own lingo, hashtags, and fundraisers (such as the recent Spare a Rose, Save a Child campaign). So it is no surprise that my social media feeds have been blowing up with news of a recent Miss Manners column that advises taking care of diabetic testing and injections in restrooms.

Here are some blog posts written by PWD on the subject:

Although I do not have diabetes, as a person with multiple complicated medical needs and a better than average understanding of some of the medical needs of others, I find the advice given by Miss Manners alarming. You can read the entire question and her answer here, but I have quoted some key parts below.

Absent an emergency, medical applications (like bodily functions and grooming) are properly done out of sight — meaning in private or in a restroom — unless they can be done so surreptitiously as to be unrecognizable as such. Miss Manners does not object to a pill taken at dinner, so long as it is not accompanied by a dissertation on your cholesterol.

… Miss Manners draws the line at drawing blood. Restrooms exist to provide a proper location for such necessary activities when away from home, and those who use them have no business monitoring the respectable, if sometimes unaesthetic, activities of others.

Just so we’re clear, according to Miss Manners, addressing critical medical needs is on the same level as combing your hair and reapplying lipstick. She will allow you to take a pill at dinner, with the understanding that you are as stealthy as possible lest you bring down the entire party by reminding people that our bodies are sacks of meat and bone that will wither and die no matter how fancy an establishment we choose to patronize. I am sure Miss Manners would scowl at my pill case with its multiple compartments containing various pills that I must take several times a day, most importantly when eating.

As a person with IBD and several surgeries, I have done a lot of field research in public restrooms (and even some restrooming in public fields). A restroom exists primarily as a small area with a toilet and a sink. If you are lucky there will be hot water, soap, toilet paper and some way to dry your hands. If you are unlucky the stalls will have no doors, there will be no soap and you will need to use the spare Kleenex in your pocket to clean yourself up. Access to restrooms is not a universal right. In Mumbai, women suffer abuse due to lack of restrooms. A few years ago, the state of Virginia closed 18 public highway rest areas in an effort to save money. This action did not stop nature from calling, however, and small businesses along the highways saw a sharp increase in costs for water and restroom supplies, but gratefully few turned people away. I fly infrequently these days (a consequence of strained finances, and an unruly gut that makes travel difficult physically and stressful), but remember many occasions when 2 out of 3 airplane lavatories were out of service for all or most of the flight, and frequent occasions when the fasten seat belt sign prevented passengers from getting up for any reason for hours at a time. There is even a post-9/11 rule in place that forbids airplane passengers from leaving their seats within 30 minutes of DC.

So if it is so difficult to find a restroom in order to use a toilet, imagine how it must be to find one for any other “medical application.”

After my last intestinal surgery, I was sent home with a drain. This was a clear plastic-like tube that went into my abdomen, with an external bulb attached to the end. The bulb would slowly collect fluid from the inside of my body and I would need to empty it occasionally. I wore extremely baggy clothing during this time and the entire device was concealed (although I looked a tad lumpy). The problem arose when I had to empty the drain at work. The restroom had 4 stalls, and two sinks on a shared counter space. Since most of the employees on the floor were women, and many of those women were obsessed with using the restroom to freshen up their appearance or as a gossip lounge, there was no way for me to use the sink to empty the drain with any privacy. Ultimately I had to approach my kindest co-worker discretely and ask her if I might use her private office once a day to address my medical needs. Thankfully, she agreed. Thankfully, I was able to trust her with this delicate request. Thankfully, my job was not endangered as a result of this medical need. I am sure this scenario has not played out as favorably for many people.

Logic aside, my other issue with Miss Manners’ response is the idea that medical needs should be hidden. This is the sort of thinking that will cause children to be forced into homeschooling rather than join a typical classroom. This is the sort of thinking that reinforces the stigma of illness – the more it is concealed the easier it becomes for people to (wrongly) assume it’s not a problem that warrants solving. Woe to those healthy persons who must suffer to observe us ill?

In many ways I am a model sick person, by Miss Manners’ standards. I “don’t look sick” and go to great lengths to conceal my illness through a mix of medication, strict modifications of my personal life, and health aides that I have learned to conceal. As I child, I had a PICC line that was covered with bandages and long sleeved shirts for school hours, then once I was safely home, the PICC was connected to a bag of TPN to provide vital nutrition. The whole apparatus went inside a specially designed backpack that used a battery powered pump, so I could walk around the house (or even the outside world) without being tethered to an IV pole and electrical outlet. I learned to thread the tubing through my shirt in a way that offered the most concealment. I even went trick-or-treating with my baby brother while wearing this backpack and no one had any idea.

It is great that in many cases these option exist for people. It is terrifying to think of a world where our choices are dictated not based on our own convenience but by some bizarre mandate that we not offend people by the mere fact that we are ill.

Imagine if chemo recipients were forced to wear wigs to cover their bald heads. Imagine if people with scars or stretch marks were forced to always cover these with clothing or bandages. Imagine if people with gastrointestinal distress were forced to stay home, in case their loud stomach rumblings were heard by another member of polite society.

People with medical issues face enough discrimination, stigma, and resulting anxiety as it is without Miss Manners issuing absurd rules. For many, the struggle to fully participate in mainstream society is hindered by nasty comments, dirty looks, and city planning that does not kindly accommodate even basic needs. Here is my advice to you: be safe and be kind. Do what you must in order to be safe, both in addressing your medical needs and in the choices you make regarding how and where to do this. Be kind to your fellow humans, do not go out of your way to upset them or make their own lives more difficult. But remember also to be kind to yourself and understand that you matter, your health matters and taking care of yourself does not mean you’re rude.

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13 Responses to Medical Needs Don’t Mean You’re Rude

  1. […] ChroniCarly: Medical Needs Don’t Mean You’re Rude […]

  2. Kim says:

    What a thoughtful response. Thank you, Carly.

  3. kelly2k says:

    Carly –
    Beautifully articulated – THANK YOU!

  4. “Go do that in the washroom!” is the same disapproving advice that nursing mothers have heard for decades while discreetly feeding their infants in public places. I had a friend living with T1D who thought nothing of lifting her blouse to inject herself at the lunch table, but made no secret of her open disdain for breastfeeding mums. A double standard among some, perhaps?

    • Carly says:

      You have to laugh at human nature sometimes. I think it’s just that what is familiar is not seen as odd, but as soon as someone does something that we don’t do (or don’t have to do) then our immediate reaction tends to be a sort of shocked gasp. Believe me, before I got IBD I rarely used a public restroom at all, for anything, and now I could write a travel guide focused JUST on restrooms. Thank goodness that humans do have the ability to learn, adapt, and change or I fear there’d be no hope for any of us!

  5. Rachel says:

    I love your take on this situation and the broader view that it’s not rude to live with a medical condition. Concealing an insulin pump and continuous glucose monitor, testing and injecting if I need to are small and nearly unnoticeable actions compared to the medical needs of others, my late father whose various surgeries left him caring for an ostomy come to mind.

    I feel very much for the writer of the letter and others with medical conditions that they feel what they have to do for their own health is so off-putting to others that they must try to hide it.

    • Carly says:

      Thank you for your comment, Rachel. I think that the more comfortable and familiar we are with various medical devices and needs, the less of an issue they become. I’m in a Facebook group for people with IBD and a lot of them have ostomies and talk about their fears and also how they have learned in many cases that it’s not a big deal. A lot of the anxiety comes from not knowing what to expect and fearing the worst possible reaction from other people.

  6. Mary Jo Medosch says:

    Bravo! I applaud you for speaking up and helping those who no longer have the energy nor the ability to express in words the way you are able to convey. Very well done.

  7. Heidi says:

    Applause to you Carly! Love “taking care of your health doesn’t mean you’re being rude”. So simple, so correct, so well put.

  8. J says:

    Carly,

    Thank you so much for sharing your thoughts and your personal experiences in regards to medical needs. I agree with what you say, we all deal with enough hurdles as it is. I find it refreshing to read from someone who does not have diabetes. I too have multiple health challenges and they are all invisible. Looking forward to reading more and if ever I can be of assistance to bring awareness to any cause you are passionate about, health or otherwise, please don’t hesitate to get in contact with me. Sending lots of hugs and wishes for a wonderful weekend. Thank you for supporting the DOC, we love you!

    • Carly says:

      Thanks J! I am a firm believer in breaking down silos between various medical conditions whenever possible. We have a lot of things in common and can all learn from and support one another. Thanks for the love back on behalf of the DOC :)

  9. […] over on TuDiabetes; Kim Vlasnik; Kerri Sparling; Jess at NachoBlog; Sara Nicastro; Carly at ChroniCarly; Kelly Kunik; Scott Strange, here and here; Illana; Tom Karlya; Stacey Simms; Rachel Kerstetter, […]