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.
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?