"...breast cancer has become the most heavily promoted disease in this country, women walk in with information, misinformation, strongly held beliefs, opinions, and frequently a literal army of supporters."
I completely agree with this statement which came from this article which I found to have brought up many thought provoking points. There is no other ailment which has an army of patients, painting the world pink, with the best of intentions, and share good and bad information.
The author, an oncologist with 30 years of practice, concludes with:
"The point is that breast cancer patients are a particular entity, heavily influenced by the media, social networks, and well-meaning friends. They envision themselves as patients, victims, warriors, survivors, experts, activists, victors, and people who just hit a bump in the road and kept moving forward. Pay attention to which one is sitting in front of you."
As you know I have numerous ailments. They all have message boards, support groups, web pages full of information, and all sorts of resources.
None of my other ailments have:
- As many 'warriors'
- Awareness messages on Facebook which want you to post your bra color
- Color coded events
- Arguments over treatment among friends
- As much 'advice' from know it alls who never had the disease.
I meet people all the time with breast and other cancers as well as all sorts of fun ailments. A breast cancer diagnosis turns on the media and the pinkification and takes off. All other ailments seem to have a different effect on the patient. Media influence is a huge part of it.
My advice is pay attention to your doctor's advice.
Showing posts with label social media. Show all posts
Showing posts with label social media. Show all posts
Would you share?
Two things happened yesterday (well lots more than two things happened in my life but these two made me think) and I started thinking. How much and when do you tell your cancer story? This isn't as easy as you might think. Once you tell the world you can't 'untell' it. And people still have a tendency to put you in that special category of 'on their way out' once they hear that c-word. Would a hiring manager, ignore the C-factor when reviewing your resume? Would people start treating you differently? Would it bring the crazies out of the woodwork? Would friends start rejecting you? These are very real questions.
First and foremost, your health is no one's business but your own. If you choose to share, its your decision. No one should 'share' for you. It is not their story to tell. And second, how public do you want to be? Again, you can't undo it. Once its out there, it never goes back. But I will say that my blog was picked up by Parade Magazine last fall (scroll down, I am below the fold) and it didn't change my life. I don't think anyone read it.
Yesterday morning my husband forwarded me an email from work where a colleague's wife has been diagnosed with breast cancer. The email came from an employee who had spoken with the colleague (husband) and he thought his wife could use a plant or something (a plant? get real) and they were going to send a thinking of you card. I'm not sure what good a plant would do but a card might be nice. (I think a plant is husband-speak for I haven't got a clue but its a really nice thought to do something.)
When I was diagnosed my husband didn't bring it up at work because he didn't think it was their business (and I agreed). I did urge him to privately tell us boss that I was having health issues and that is why he kept taking time off to take me to treatments. But nothing was ever circulated through the office about me. I don't think I would want it.
Would you want your health to be emailed around your spouse's office? I would want to be consulted and ask what benefit would come out of it. A card is okay. A stupid plant not so much. A bunch of sympathy from people you don't know? Maybe if we socialized with my husband's colleagues and their spouses, but I do not make deep long term friendships through work environments. Work and friends are separate. So I guess I'm saying you can keep your cards and plants.
Later in the day I received an email from an online cancer community that Women Magazine is looking on Facebook for breast and ovarian cancer people to tell their story:
Breast and ovarian cancer survivors share your story! We love to include survivor stories in our quarterly print issue. If you would like to share your story in our fall issue, please let us know by sending an email to editor@omnihealthmedia.com.
In the first nano-second I was going to send in my name. But then I took a second nano-second to say 'no thanks, I want my privacy'. I would prefer not to be put in the spotlight of national media. That's a big step that I am not ready to take.
First and foremost, your health is no one's business but your own. If you choose to share, its your decision. No one should 'share' for you. It is not their story to tell. And second, how public do you want to be? Again, you can't undo it. Once its out there, it never goes back. But I will say that my blog was picked up by Parade Magazine last fall (scroll down, I am below the fold) and it didn't change my life. I don't think anyone read it.
Yesterday morning my husband forwarded me an email from work where a colleague's wife has been diagnosed with breast cancer. The email came from an employee who had spoken with the colleague (husband) and he thought his wife could use a plant or something (a plant? get real) and they were going to send a thinking of you card. I'm not sure what good a plant would do but a card might be nice. (I think a plant is husband-speak for I haven't got a clue but its a really nice thought to do something.)
When I was diagnosed my husband didn't bring it up at work because he didn't think it was their business (and I agreed). I did urge him to privately tell us boss that I was having health issues and that is why he kept taking time off to take me to treatments. But nothing was ever circulated through the office about me. I don't think I would want it.
Would you want your health to be emailed around your spouse's office? I would want to be consulted and ask what benefit would come out of it. A card is okay. A stupid plant not so much. A bunch of sympathy from people you don't know? Maybe if we socialized with my husband's colleagues and their spouses, but I do not make deep long term friendships through work environments. Work and friends are separate. So I guess I'm saying you can keep your cards and plants.
Later in the day I received an email from an online cancer community that Women Magazine is looking on Facebook for breast and ovarian cancer people to tell their story:
Breast and ovarian cancer survivors share your story! We love to include survivor stories in our quarterly print issue. If you would like to share your story in our fall issue, please let us know by sending an email to editor@omnihealthmedia.com.
In the first nano-second I was going to send in my name. But then I took a second nano-second to say 'no thanks, I want my privacy'. I would prefer not to be put in the spotlight of national media. That's a big step that I am not ready to take.
The people who don't social media
Basically if someone isn't on social media with me - twitter, FB, Linkedin, Pinterest, etc - they will probably not have any idea of what I am up to and what are my latest ailments.
The friends I see and actually go to lunch with or out for coffee with one on one have a good understanding of how I am doing because it is a chance to discuss things face to face. But still not as good as the social media thing.If I only get together with people as part of a group, they probably don't understand either because I am not going to take center stage to discuss my health when there are more interesting things to talk about.
While I like talking on the phone, the last thing I want to do is repeatedly run down the current status of all my ailments. I don't. If you ask a specific question - one of the most common ones I get is 'is your back any better yet?'. The answer to that question is 'no it is not and will not be better so shut up and stop asking'. I created a blog which is the center of all my social media to handle all the ailment questions.
So, if you aren't on social media with me, you are out of the loop. And if you aren't on social media, you probably aren't reading my blog and will never get this message. Sorry, I don't feel inclined to repeat my medical ailment status over and over again. And they are my ailments affecting my body so I am allowed to handle them the way I want to. My health is about me, my health is not about you. So if you want to know how I am doing, you might need to make an effort from time to time.
Yes those of you who aren't on social media, you might need to make more of an effort to keep up with your friends who are. Social media is becoming interwoven into the way we communicate on many levels. The news broadcasts reference online material, events ask you to tweet about them, stores have a Facebook page and a Pinterest page for their wares. Special deals are available through social media. So if you aren't there, you don't know what is going on with me and many other things. In other words, you are being left behind.
Social media for patients
In this day and age of vanishing privacy with the spread of social media, one of the biggest groups this has had an impact on is patients - those with an ailment or hundred. When the internet first came along, one of the first groups to jump online were farmers and ranchers - they could check corn futures from the isolation of their snow bound abodes. As long as they had a phone line and a dial up (remember those) modem, they could improve their own financial security.
Now us patients can bare our innermost secrets to total strangers and get support world wide from people we will probably never meet. The internet has provided us access to millions of terabytes of medical information and the latest research. Social media has allowed us to strengthen bonds with strangers and learn to advocate for those who we meet online. I get support that gets me through the medical (mis)adventures and roller coaster twists and turns. We form little democracies with virtual mayors and leaders with our avatars displaying who we are and what we care about.
As a professional patient for the last five years I think this is the one thing that has had the biggest impact on my mental well being. Instead of being isolated by my ailments, I am supported through this online. When I had my hysterectomy in 2005, someone suggested Hystersisters as a place to find information and support. Up until that time I had primarily used the internet for work, job hunting, games, sending emails, etc. But an online community? I had no idea they existed and provided so much information.
Then with cancer, I found other communities - Crazy Sexy Life and the Komen message boards, quickly followed by a million more cancer message boards, Wego Health, Facebook, Twitter, and my latest is Pinterest. What I find humorous is that I have only been on Facebook for four years. I was already on Twitter, and several cancer message boards before then.
But social media is now something I would find difficult to live without. How else would I be able to find support when I need it?
Social media for patients
What was I thinking? I volunteered. My husband said volunteer is a synonym for sucker, which sometimes I believe. But I make him volunteer at things anyway. At one organization he is known as the man who 'picks things up and puts them down'.
Anyway, I belong to a million or ten online communities. I am on Facebook and Twitter and use both accounts. My business/professional (a/k/a non-patient)persona is on Linked In as well. I also review almost every restaurant and hotel we go to (but that's a little different).
As a medical patient I have seen all kinds of communications and support. And by keeping the active bullshit filter in place, I have managed to avoid the rest of them. There are some sites I do not participate in because I don't like what they do or the way they manage things but I am pretty active otherwise.
But anyway I belong to one site called Wego Health Activists. I contribute there periodically (when I remember to repost by blog over there) and actually met with them in person - which is kind of weird for an online community to meet in person. But they approached me and asked me if I would participate in a session at a pharmaceutical company on the importance of social media. It would mean going to New Jersey for a day. Which means travel. But it would also give me a chance to contribute.
If you think about all the social media that is out there and all the ways patients can communicate with each other - there are organizations, hospitals, medical facilities, patient run, etc. But you never run across any input from pharmaceutical companies do you? No. They are in a black hole somewhere. No input. No information. At all.
Now I know there is the issue of everything has to be approved by their legal department and they can't give medical advice because they aren't your doctor but wouldn't it be nice if there was a little communication in language we could all understand. Its all part of the sharing that is inherent in social media for the rest of us.
Social media is a very important part of being a patient. We get support, we get information, we get referrals, and most importantly, we learn we are not alone. So why can't the rest of the health industry be a part as well?
Anyway, I belong to a million or ten online communities. I am on Facebook and Twitter and use both accounts. My business/professional (a/k/a non-patient)persona is on Linked In as well. I also review almost every restaurant and hotel we go to (but that's a little different).
As a medical patient I have seen all kinds of communications and support. And by keeping the active bullshit filter in place, I have managed to avoid the rest of them. There are some sites I do not participate in because I don't like what they do or the way they manage things but I am pretty active otherwise.
But anyway I belong to one site called Wego Health Activists. I contribute there periodically (when I remember to repost by blog over there) and actually met with them in person - which is kind of weird for an online community to meet in person. But they approached me and asked me if I would participate in a session at a pharmaceutical company on the importance of social media. It would mean going to New Jersey for a day. Which means travel. But it would also give me a chance to contribute.
If you think about all the social media that is out there and all the ways patients can communicate with each other - there are organizations, hospitals, medical facilities, patient run, etc. But you never run across any input from pharmaceutical companies do you? No. They are in a black hole somewhere. No input. No information. At all.
Now I know there is the issue of everything has to be approved by their legal department and they can't give medical advice because they aren't your doctor but wouldn't it be nice if there was a little communication in language we could all understand. Its all part of the sharing that is inherent in social media for the rest of us.
Social media is a very important part of being a patient. We get support, we get information, we get referrals, and most importantly, we learn we are not alone. So why can't the rest of the health industry be a part as well?
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