Last week, I began a series of treatments for a medical issue that I have. Don't worry, I'm ok - it's nothing overly serious, and treating now will prevent it from reaching that point in the future. But, as it turns out, it's been a lot more intrusive on my life than I anticipated when I first set up the plan with my doctor. That's ok - I know in the long run I'm going to feel better, and be healthier, than if I hadn't had this done. But in the short term, well, it's been a harder week than I thought it would be, and I still have a few weeks to go.
All of this has led me to think about how we discuss medical issues. Of course we are all entitled to our medical privacy (HIPAA laws assure that). However, I've had a lot of thoughts back and forth about privacy, and discussing my treatments, over the past week. So far, I've kept the details mostly private - about 2 dozen people know what I'm having done (if not full details), and that includes my family. So, not too many people (I know a lot of people). About half that (~12 people) know full details of everything I'm going through (and about 5 have been nice enough to listen to me complain in great detail). On top of that, another 10 or so know that I'm having something done, but don't know any details at all.
Considering the number of people I know and talk to each day (I work in an office with almost 20 people alone), this is a pretty small number of people to be aware of what's going on. I've kept it pretty private for a few reasons.
First, it's not really anyone's business, right? What I have going on doesn't need to be broadcast to anyone except my very close friends and family (who are there to support me).
Second, it's kind of embarrassing. Maybe I shouldn't be embarrassed (there's nothing I did to cause this, it's hereditary), but since there are some physical signs it's nothing that I really want to call attention to, and I feel like talking about it will do that.
Third, don't we all overshare already? Shouldn't some things be private? I know it's kind of funny to talk about privacy on a blog, that I'm about to share on Facebook, but it does make me think. In an era where we all share photos, stories, inane details, videos, etc on so many different social media platforms (and I most certainly fit in that category), isn't it a good thing to keep some things private? Do I want to broadcast photos and details of what I'm going through where potentially anyone can find them? Probably not.
However...I can't help but think about the other side as well. And in thinking about sharing what I'm going through, and the details, I can't help but think of some advantages.
First, it can be difficult to explain to those I do see every day why I'm experiencing some pain, or why I'm going to the doctor, if I don't provide some kind of description (which I have not yet done with all of those people). Telling them straight out would be easier.
Second, I'm feeling kind of isolated. This first week of two treatments has been harder on me than I thought that it would be, and even with the excellent support of my family and a couple of good friends, it would probably be really helpful to talk to someone who has gone through this. By not talking about it, I'm eliminating my ability to find out if someone I know has gone through the same, and maybe get support from someone who truly understands.
Third, don't we stigmatize health issues enough? We don't talk about SO many health-related issues - pregnancy loss, abortions, even treatments like this - and doesn't not talking about it continue to put something of a stigma on it? Makes it seem like these are things that always happen to "someone else", and that it should be something to be embarrassed about? Maybe talking about it with others, and not keeping everything to myself (at least giving a name to what I'm going through), would be helpful, both to me and to others. Maybe someone else that I know has gone through it, and didn't want to talk about it, would see what I wrote and we could start a conversation.
Even with writing all of this, I'm still torn. Part of me would love to shout out about what I'm going through, and in case I decide to do so I am photo documenting what I'm going through. Who knows if I'll ever share it here, but I guess it's good to have, if only to see the improvement from the "before" to the "after" (which should be in a few months). But that other part of me would still like to have some privacy; on top of that, I don't want to be seen as asking for sympathy - I'm not. That's not what this is about. I'm really talking about what it means to keep something, particularly a medical issue, private. Is that the right thing, the way I think it is? Or is there more benefit to sharing? My thoughts tend to circle around, and as I said, I'm still torn.
So, if you've taken the time to read this, maybe comment below or on my FB post, and let me know your thoughts. That doesn't necessarily mean that I'll change my mind...but if the treatments get that much more, and I'm in more pain, who knows - maybe I'll just reach my breaking point and share it all anyway.
All of this has led me to think about how we discuss medical issues. Of course we are all entitled to our medical privacy (HIPAA laws assure that). However, I've had a lot of thoughts back and forth about privacy, and discussing my treatments, over the past week. So far, I've kept the details mostly private - about 2 dozen people know what I'm having done (if not full details), and that includes my family. So, not too many people (I know a lot of people). About half that (~12 people) know full details of everything I'm going through (and about 5 have been nice enough to listen to me complain in great detail). On top of that, another 10 or so know that I'm having something done, but don't know any details at all.
Considering the number of people I know and talk to each day (I work in an office with almost 20 people alone), this is a pretty small number of people to be aware of what's going on. I've kept it pretty private for a few reasons.
First, it's not really anyone's business, right? What I have going on doesn't need to be broadcast to anyone except my very close friends and family (who are there to support me).
Second, it's kind of embarrassing. Maybe I shouldn't be embarrassed (there's nothing I did to cause this, it's hereditary), but since there are some physical signs it's nothing that I really want to call attention to, and I feel like talking about it will do that.
Third, don't we all overshare already? Shouldn't some things be private? I know it's kind of funny to talk about privacy on a blog, that I'm about to share on Facebook, but it does make me think. In an era where we all share photos, stories, inane details, videos, etc on so many different social media platforms (and I most certainly fit in that category), isn't it a good thing to keep some things private? Do I want to broadcast photos and details of what I'm going through where potentially anyone can find them? Probably not.
However...I can't help but think about the other side as well. And in thinking about sharing what I'm going through, and the details, I can't help but think of some advantages.
First, it can be difficult to explain to those I do see every day why I'm experiencing some pain, or why I'm going to the doctor, if I don't provide some kind of description (which I have not yet done with all of those people). Telling them straight out would be easier.
Second, I'm feeling kind of isolated. This first week of two treatments has been harder on me than I thought that it would be, and even with the excellent support of my family and a couple of good friends, it would probably be really helpful to talk to someone who has gone through this. By not talking about it, I'm eliminating my ability to find out if someone I know has gone through the same, and maybe get support from someone who truly understands.
Third, don't we stigmatize health issues enough? We don't talk about SO many health-related issues - pregnancy loss, abortions, even treatments like this - and doesn't not talking about it continue to put something of a stigma on it? Makes it seem like these are things that always happen to "someone else", and that it should be something to be embarrassed about? Maybe talking about it with others, and not keeping everything to myself (at least giving a name to what I'm going through), would be helpful, both to me and to others. Maybe someone else that I know has gone through it, and didn't want to talk about it, would see what I wrote and we could start a conversation.
Even with writing all of this, I'm still torn. Part of me would love to shout out about what I'm going through, and in case I decide to do so I am photo documenting what I'm going through. Who knows if I'll ever share it here, but I guess it's good to have, if only to see the improvement from the "before" to the "after" (which should be in a few months). But that other part of me would still like to have some privacy; on top of that, I don't want to be seen as asking for sympathy - I'm not. That's not what this is about. I'm really talking about what it means to keep something, particularly a medical issue, private. Is that the right thing, the way I think it is? Or is there more benefit to sharing? My thoughts tend to circle around, and as I said, I'm still torn.
So, if you've taken the time to read this, maybe comment below or on my FB post, and let me know your thoughts. That doesn't necessarily mean that I'll change my mind...but if the treatments get that much more, and I'm in more pain, who knows - maybe I'll just reach my breaking point and share it all anyway.
4 comments:
I don't have any answers about privacy -- I probably used to overshare, and then my wife became a public figure and I decided to undershare -- but I'm sorry you are suffering through something. Let me know if you need any help with Calla or Evan.
I am sorry to see this Abbe. I hope you are in the hands of great doctors. My grandma always told me "this too shall pass".... Hang in there and rely on prayers from those who love you...
Firstly sending big love to you across the ocean :) xxx Secondly I think this is a journey you are on and the answer to your question may change with time or circumstances. I always think 'go with your gut'and do what's best for you at that moment. On a side note Maybe there are private support groups you can link into as well? Hope your feeling better soon xxxx
I'll write here what I wrote on Facebook.
I am here for you if you need anything, Abbe... anytime! I'm right down the road. Please, please do not hesitate to contact me.
As to privacy, you know that I've had a variety of serious health issues during the past few years, in addition to some more minor things. I echo what many others said above: every situation is different, every person is different, and you need to do what works for you within your comfort level. Personally, I keep it private (only my husband and me) at first while I figure things out and understand the situation/diagnosis, and then share with my closest family and friends. I do think there is a lot of value to sharing, subject to each person's comfort level with how wide of an audience, because of the support. I feel that I've become more open than I used to be, which was a big adjustment for me as I tend to be very guarded about my personal business. To what Emily raised, I would never begrudge someone for "oversharing," whatever that even means. If someone is seeking support, either provide it or ignore it. There is no reason to be put off by it.
Sending well wishes your way, and any other type of support you need or want.
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