What is Non-hodgkins Lymphoma
Non-Hodgkin lymphoma is a type of cancer arising from lymphocytes, a type of white blood cells. It is so called because of its distinction from Hodgkin's disease, a particular subt...
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WHO HAS THE RIGHT TO PUBLICIZE YOUR CANCER HISTORY
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I am just so very angry and confused. My sister has taken it upon herself to dedicate a Lance Armstrong Foundation page to me on the internet. I was informed of this public invasion of privacy via an e-mail after the deed was already done.
Everyone in her address book has apparently been asked to "sign up" on this dedication page which has my real, full name in huge letters at the top. Anyone has access to this page. I am currently unemployed, and my resume is posted on about 17 job sites. My sister knows this, yet has used very poor judgment in publicly "outing" me. How soon can I expect this page announcing that I am a cancer survivor to surface when my name is googled by some prospective employer? Shouldn't it be our own decision to disclose medical histories? Am I over-reacting? I know her intentions were good, but how do I approach her with my feelings about this? What do you think as cancer survivors? I really need help with this one, and I don't think anyone who hasn't been through what we've been through can "get it". Thanks for any advice or insight or scolding you can give me. Livestrong, hurtin' Posted on 07/15/09, 05:07 pm |
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I don't think you are over reacting. I'm a NHL survivor. I only want the people I chose to know. Even though we are in remission it can come back. I'm lucky I work for myself and don't have to worry about a employer knowing my medical history. Your sister should have asked your permission before she did what she did. It is hard enough dealing with this disease, and to have to worry about a perspective Employer finding out. Sorry this happened to you.
Steph 
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I am sorry this has happened to you. In this time of technology, I don't think most people know what they are doing when they post things on the internet. I was pretty shocked when I googled my name. Everything from my business to my page on the American Cancer Society came up.Your sister probably did not mean any harm to you, But I would definately discuss with her the end results of doing this type stuff.
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Here's a story: I was diagnosed with stage I NHL 11 years ago in South Afirca. I went through chemo and radiation and have now been clear for a little less than 11 years.
After I'd been well a couple of years I started dating my now husband of 8.5 years and married him. We moved to the UK for 9 months and then to New Zealand. I'd been here for a while (not too sure how long) when I asked my GP to send me to Oncology at the hospital in Hamilton. She did so. I saw a Dr. Long, who is also South African. When I walked in for my appointment he said: "Could you please tell me about your NHL as I don't have your notes?" So I started by saying: "I had a vaginal NHL." His eyes went wide and he said: "Oh, that was you?" I think I may have been written up somewhere, sometime, by my oncologist, but he never asked my permission or even informed me. Definite invasion of privacy by your sister. You need to tell her that you're upset and why. C.
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I am still struggling with this issue as I don't think that is a bell that I can unring. Thank you for your input, and I will keep you posted when/if I finally bring this to my sister's attention when I am less upset and more rational.
ClaresMom.....Unbelievable that some oncologist (no less) deemed it appropriate to use your medical condition to advance his/her own career! You are not a case study unless you agree to be one. Shame on this so-called medical professional. hurtin'
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Hi Hurtin,
I agree with what you are saying, and I am sure it is hurting. I am pretty sure you sister meant no harm, and I am sure she would be horrified to think she has upset you in this way. Why don't you confront her about it and say that this is not really what you wanted and give her the reasons why, in that a prospective employer could be swayed by this information. Hopefully she will then cull the page and stop circulating this any further. In fairness I am sure friends of yourself and your sister would not be influenced either way. I was very fortunate with mine in that my employer was very positive, and looked after myself and the family financially with my salary fully paid for the 6 months I was off. They even gave me a laptop and mobile phone to use in hospital so I could keep in touch with work, friends and family. I do take your point, but with a diplomatic and loving chat to your sister I am sure she will see that this was not in your best interests. Good luck. Alex
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Thank you all for the good advice. My sister's response was that employers only check on facebook and myspace, and that she didn't expect my reaction at all. She said that she did it because I "inspired" her to wear the yellow bracelet. When I went on in an effort to gain her understanding, she just ignored me. So, the dedication has been removed, but my sister and I are very much not on the same page. Why is it so difficult for loved ones to comprehend things that we just see as common sense? It makes me so sad.
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