Privacy and support

With a cancer, or other 'icky', diagnosis, life has significant ups and downs. Sometimes people want support and sometimes they want privacy. It depends on lots of things - patient and family member's personality, type of diagnosis, current state on the medical roller coaster, among other issues. So the outsider is left to figure out when to intrude and when not to.

I have a friend who is coping with her husband's Stage IV cancer diagnosis and on-going treatment. It is hard to get together with  her these days as she can't tell day by day how he will be doing and if she will be comfortable leaving him. We communicate by email and try to set up times to get together - which sometimes it takes months to meet.

Another friend has a long term friendship with another couple who have suffered a horrible family tragedy last year and now the wife is dealing with metastases in her Stage IV cancer diagnosis. They are normally a very private couple and usually keep their personal issues quiet. The husband sent my friend an email about his wife's disease progression.

My thought is that this is a cry for help and I think my friend should call them up and offer to bring lunch on Saturday or something so they can get together. If they are opening up at this horrible time in their life, it is a request for support that they know my friend can provide through her own experiences and their long term friendship.

My friend, on the other hand, isn't so sure and thinks they would not want the intrusion. She knows them and I don't so perhaps she is correct here. But it is very hard to tell in these situations

When is it time to intrude and when is it time to honor their privacy. This goes beyond the issue of hospital visits that I blogged about the other day.

Many patients with icky medical diagnosis set up ways to control communication so they are not overwhelmed - whether a blog (like me), a web page, Facebook page, Twitter feed, or email blasts. It can be very difficult to control the communication flow. How to balance the latest medical information, need for privacy, and over anxious friends and family members is a huge problem for many patients.

The last thing many patients need is daily phone calls from the same people asking for the latest updates - what did the doctor say, what did your scan show, are you worried, how are your children coping -  have you told them yet, and a slew of other questions that pressure the patient to share when they may not be ready to do so.  And if there are repeated requests over and over the patient's stress mounts at an already stressful time.

A patient's right to privacy must be respected but sometimes they do need some support. The tricky part is figuring out when to intrude.

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.