Private or Public

There is something peaceful about being a private person.  It’s like sitting beside a lake that no one knows about.  You can enjoy the peace of the moment without intrusion or interruption.  The question then becomes what do we gain by being private.  

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When I was first diagnosed, I was completely lost, concerned and afraid to tell anyone.  After a few weeks on prednisone, I felt better and that allowed me to be in full denial, which is where I stayed for a long time.  Even though my life was changed dramatically, I was still unable to deal with the permanancy of what had happened.  

I will never forget the first rheumatologist I visited.  He said “you need to lose that deer in the headlights look you have right now and get back to your life.”  Huh?  He had just confirmed I have a chronic disease and he wants me to do what?  Then he handed me a legal document to sign stating I understood the risk of take the medicine he was prescribing for me.  Warm and fuzzy feeling – no!

For some time there were only a few people who knew of my diagnosis.  About a year later there were a few times I thought I would be brave and share. However I found the response was generally the same – “yeah, I’ve got some stiffness in my knee, too.”  

I volunteered at an Arthritis Walk recently.  It felt good.  It felt good because there were people there just like me.  They understood.  We shared an unspoken bond.    One lady told me that her 2 year old son had just been diagnosed a few months earlier.  We were having heavy rains the day of the walk and she told me she left him at home because the rain would make he feel terrible.  Then she said, I don’t know how you’re doing this, with the rain, I know you must feel really bad.  

I was surprised by her comment.  Finally, someone understood.  

Did you initially tell others about your diagnosis or did you decide not to tell?  Why?  Do you think people understand this disease?  

Donna

 
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2 thoughts on “Private or Public

  1. Hi Donna, I did tell others right away, both family and friends. Many had seen my condition (I was in a wheelchair the last weeks) so they obviously wondered how I were doing. I also started a blog about my RA right away in order to “get my feelings out”. After awhile I incorporated it into my regular blog because I thought it was too difficult to keep up with two blogs.

    I do not tell everyone I meet unless something happens so I feel “forced” to do it. Such as when I switch jobs. I’m a consultant so I’m on different assignments every now and then. Everyone does not need to know about my issues, but at the same time I write publicly about it on a blog…

    I totally understand the feeling of someone finally understanding how you feel though. People who are not familiar with the disease can’t understand the issues. I know my family tries and they see when I don’t feel good, but they obviously can’t know how bad I’m feeling. I’m part of a group on Facebook for rheumatism here in Stockholm and we met every other month and that is a great way to talk about all feelings related to the disease because they do understand.

    I also find it hard talking about tiredness with people who don’t have rheumatism. In Sweden most people are a little tired winter time as it’s so dark here but for me (and others in my situation) it’s especially rough with the tiredness during this time. I could sleep for days and it wouldn’t make a difference, so then to hear “i’m also tired” is not fun. I’ve just stopped talking about it… less annoying for me… 🙂

  2. Thanks for sharing, Cecelia. I wonder if it would have been any different for me if I had shared sooner. I think it does a lot of good to share and glad to see so many doing just that. You have an interesting comment regarding the winter time and being tired. I’m sure that would bring an extra drain on how you feel.

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