Not sharing your medical news

I had dinner with an old friend last night, as well has her husband, and some of my family. I hadn't seen her in a few years just because both of our lives have taken us in different directions.

In talking, she shared that she had gone through a second breast cancer diagnosis last summer. And she had decided not to tell everyone about it. She told some people but not many more about her diagnosis, decision process, surgery and treatment. Why? Because she didn't want to and she decided there really wasn't a need for it. So she didn't.

I completely agreed with her decision and fully support it. Why? Because its what she was comfortable with. With any medical diagnosis, it is completely the patient's choice on how to handle it. (I mean unless there is an issue of lack of mental capacity.)

Seriously, the absolute worst thing that can happen to a patient if other people decide to share their diagnosis publicly. Imagine that you get a diagnosis and it ends up as the front page of your local newspaper? (This must happen to celebrities with the National Enquirer, and similar publications, all the time.) Or, you go to a theater and have the emcee start with a spotlight on you and the announcement, 'let's welcome Caroline and her newest cancer diagnosis'. That would really suck.

This is where HIPAA laws are important. It doesn't matter if you are the patient's friend or family member, its not your news to share so shut up! HIPAA laws should also apply to friends and family.

Keep your information to yourself

Every time you sign up for another store's shopping program, where you are enticed by the discounts and special offers, you are actually giving away your information. I don't consider it as much of a problem at a clothing store or the grocery, but when its the pharmacy, that becomes another story.

CVS, Walgreens, and RiteAid offer their rewards programs and they entice you to use the card because you get special prices on products and other financial gains. When you pay for your prescriptions along with shampoo and bandaids or provide personal data points such as body weight, blood sugar, etc, it becomes another story.

"Walgreens this month launched a new smartphone app that customers can sync up wirelessly with their blood glucose and blood pressure monitors so they can feed their personal health information directly into the chain’s data system in exchange for discounts.

At CVS, you can get $5 back for every 10 prescription refills — if you waive your right to health care privacy protected under the federal health law known as HIPAA. And Rite Aid is experimenting with a service that other retailers are using to collect tons of data: special lockers that you can use to charge your cell phone for free, if you’ll give up your phone number, insurance costs, and shopping preferences."

The key words in there are "if you waive your right to health care privacy protected under the federal health law known as HIPAA". I bet you didn't even realize that you waived your HIPAA protection.

Seriously? I had no idea I was waiving my HIPAA right to privacy. Until I read this article I did not know that was going on.

"When asked how Walgreens was using all that health data, company spokeswoman Mailee Garcia said the company “does not sell personally identifiable information to third parties,” but may sell de-identified information."

Garcia said Walgreens is not currently using health data to market to the customers who provide it. But the app’s privacy policy explicitly states that Walgreens may use customer data to personalize advertising. The store can also combine data entered into the health app with personal information collected by other companies to create a more robust profile of individual customers.

The policy also gives Walgreens the right to change its privacy terms at any time and says customer data will be sold as an asset if Walgreens is acquired by another company."

So now that I know all this, I will not be swiping my card when I pay for prescriptions. I will pay for prescriptions at the pharmacy without my card and then pay for other items to get the discounts with my card. Seriously its not worth my privacy about prescriptions. If it wasn't the way to get the sale prices (and I am secretly very cheap and never pay retail unless I absolutely have to), I would ditch my card all together.

The big reveal

I have worked at my  job for almost 6.5 years and am leaving in five weeks. Well I will work remotely one day a week and come in once a month until my replacement is found. Which I assume will take until spring.

I have made friends at work as I have been there so long. They make fun of  my health regularly. And they only know half of it. Yesterday's joke was that I have more ailments than all the patients on the first floor of the local hospital combined. We laugh about it. They wonder how I can laugh about it and I say I have to laugh about it because I really do not have any other choices.

But they really do not know all about my health. They know I have a bad back, fibromyalgia, and rheumatoid arthritis. They do not know about cancer and all the rest. I have decided what I will do when I am done working there is I will give two of my co-workers a link to my blog so they can keep in touch and follow along with the rest of the disasters in my health (unless I miraculously get cured).

In the past, I have never shared my medical crap with my co-workers. I have always felt it doesn't belong in the workplace and I might some day want a reference for another job. At this point, I am retiring and hope to apply for disability social security. I don't plan on needing another job reference because I don't think I can continue to work at all.

So finally I can reveal my medical history to anyone I want to with out fearing any impact on my professional life. I mean who wants to hire someone as unhealthy as me?

Keeping silent on health issues

I find it very sad when people feel forced to keep their illnesses private. As you may have heard, Jackie Collins, the author, died this weekend of breast cancer. Apparently she was diagnosed six and one half years ago with stage IV breast cancer and only told her daughters.

Many people do not tell others about their ailments for a variety of reasons. Some may want to keep their health private but others I think feel forced to keep their health private. I can understand this at some levels. Why open yourself up for pity or stupid platitudes that we all want to avoid?

But then I think there are people who keep their health issues quiet because of potential bias from employers, friends, and family. The stupid 'they got *** so they are going to die' mentality. They are ready to ready to plan your funeral and split up your belongings immediately.

A woman who I worked with told me when she hears about someone's cancer diagnosis, she is ready to write them off because cancer will get them soon. This is just so sad. Others keep their health silent because they do not want to damage their career. Managers don't want to hire people who might drop dead on them, or require lots of health care and time off.

Our culture tells us those with health issues must be treated differently. When I go to the grocery store with a wrist splint on, the baggers always put two items in each bag so to 'accommodate' my perceived health. These same baggers fill the bags up when I don't have a splint on. Yes they are being polite but overly accommodating. I have no more desire to deal with twenty bags of two items each than two bags of twenty items each. But some kind of balance in the middle would be good for all. Or you could ask how heavy I want the bags to be. That would be an appreciated accommodation.

Too many people make assumptions about other's well being. Perhaps if they asked instead of assumed we would all be happier. And no cancer is not going to kill us tomorrow so stop treating us as if we were made of glass.Treat us normally. Thank you.

Telling your story

In recent months I have alluded to friends and family with health issues. I haven't provided details as it is not my story to tell. If they wanted me to share their story I feel they would tell me. But as this is my blog and not their friendship circle I doubt that would happen.

You are probably also aware that I don't always tell my medical (mis)adventures until I am ready. I have many reasons for this:

1. Sometimes minor medical issues become overblown because of my medical history. Its one thing if my doctors say to me 'with your medical history we have to be sure' and send other me off for another series of pokings and prodings. But its another thing if I have friends and family call me up unendingly over little things that are nothings. It drives me crazy.
2. Sometimes minor medical issues become much bigger ones (as a result of the additional pokings and prodings) that I need time to digest, figure out a treatment plan, and how we are going to handle it.
3. If I wrote about every twinge and pain, I would have everyone bored to death in hours. This is why my husband accuses me of whininess now and then

I realize there are normal healthier people than share their medical adventures much more openly. That is their choice.

Privacy is something that can't be restored once broken. You need to allow people the option for privacy.