Open 24 Hours

Community and Invisible Illness

As a medical librarian, I occasionally get the opportunity to teach physicians how to use medical library resources. During my last class, I had a side discussion with one of the physicians about patient communities, particularly online communities such as the DOC.

This doctor was intrigued with my diabetes blog, the DOC, Twitter and other social networking vehicles, and my experience in the library and identifying web sites where the average person finds the most information about their health or condition (read: Google) and how accurate or inaccurate those results can be. Understandably, he expressed his concern about the misinformation that people get from the internet and believe as the gospel. Being a bit old school, he prefers that patients get their information from their physicians, and not from the internet.

I can understand that perspective, but the flip side of that coin has multiple faces (and apparently isn’t very good with fractions). First, in today’s medical schools, even doctors in training get their information from the internet. And that’s a good thing. As a librarian, I can tell you that by the time a book gets in my hands to be put on the shelf, the information in it is, on average, at least one year old. With the internet, medical databases and web sites can be updated in near real-time, giving doctors, students, and even patients access to the most up-to-date information (depending on the source, of course).

Second, expecting that the only place people will get health and medical information is from their physician is not a realistic expectation. Patients get maybe 15 minutes with their doctor. The doctor practically has their hand on the doorknob to go see the next patient while they are talking to you. For someone with an illness, be it invisible or visible, that is not enough time to ask all of the questions that come to mind in living with it 24 hours a day. All questions that a person with any illness may have are important, whether they have never been asked, or whether they have been asked a million times. A patient should not have to prioritize questions they have about their disease or condition. If they have a question, they need a place to get answers, and often times that comes from a community of like people, not a physician. Doctors do not have the time to be available to answer every question that a person may have about living with their condition. There are simply too many others who need their help, expertise, and ability to write prescriptions. However, online communities (like the DOC) are available 24/7, so there are people you can turn to at 12:30am when you have a question.

Open 24 Hours - courtesy of *Sally M* on Flickr

On top of that, there is the nature of invisible illness. We, as human beans, do not like to admit or advertise that we have any type of illness, from a common cold to a debilitating disease. We go to extreme measures to keep it hidden, so as to not show weakness. A lot of times we do this subconsciously. FACT: It hasn’t been but until recently that I’ve stopped hiding my diabetes myself. There are people that have known me my entire life who to this day do not know that I’ve had diabetes longer than I’ve known them. Through this blog, the DOC, and just my ever increasing knowledge about diabetes, I feel more comfortable sharing and facilitating discussion about diabetes now than I ever have before.

It takes a tremendous amount of courage to admit out loud that we have a condition, and even more to blog about it, tweet about it, and share information about it with seemingly complete strangers (who become dear friends over time, I’m learning). What the DOC does, and what all sorts of other communities do, is help people to break the notion that having an invisible illness is a weakness. By sharing it with anyone, be it your teachers, coworkers, or the entire world, you are adding to the collective voice and helping to educate both yourself and others about your invisible illness. You are helping to break misconceptions about your condition. And you are helping yourself by finding a group of people you can lean on when you need them. Strength in numbers is especially true when it comes to living with an invisible illness.

I understand as well as anyone what it’s like to live with an invisible illness. There is no such thing as a day off from diabetes. I get depressed (which is another invisible illness), both from the demands of trying to keep up with this damn disease, the guilt and feeling of helplessness when I can’t seem to get things right, and having to carry them along with all the other burdens in life. I am thankful that most days I can say that I carry the load with strength and courage, but some days I succumb to the pressure, and it overwhelms me. But it does not beat me. I take a moment. Maybe two. I re-evaluate. I do a mental SWOT analysis. I change things if I need to. Then I bounce back. And I know that if I have questions, or need support, I’ve got a community behind me that is ready and willing to add to my strength.

3 comments

  1. You handle diabetes, and everything else that comes your way, with humor, strength and courage. It is one of the many reasons why you are TOPS and I love you!!

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