Archive for the 'Talking about it' Category
Did you know that May 10 was World Lupus Day? May is Lupus Awareness Month — and there is also multiple sclerosis month, breast cancer month, etc.? Anyone else think that there’s something odd with the fact that we have to dedicate a day or month to create attention to DISEASE that so many live [...]
Recently I experienced, yet again, how hard it is to work and live with waxing/waning chronic illness. And this just reinforces why I think that that working is the smartest thing I can do for myself. When we traveled to California to visit friends, I knew it would tire me. The time change and long [...]
Your health isn’t a sound byte
Have you noticed how often you’re greeted with, “Hi, how are you?” (or “Hey, how ya’ doin’?”), depending on the circles you travel in)? Today I counted 18 times so far and it’s only 4:00pm. I’m working alone and only left the office for one brief errand. Do you work in an office with [...]
Walk for disclosure
Recently, my daughter, Lucy, a legislative aide to a New York City Council Member, contacted another Council member’s legislative counsel, Q. When Lucy didn’t hear back after a few days, she contacted another member of his office. Not long after, Lucy got an email from Q explaining why he had been unavailable. He had been [...]
It’s sad that we need to set a “DAY” aside to recognize something as important as rare diseases (and grandparents, secretaries…). Feb 28 is National Rare Disease Day, NORD, notes one of my favorite bloggers, Laurie Edwards (achronicdose). She should know. She lives with rare disease. The goal is small: Raise public awareness (and then [...]
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Doctor, doctor, give me the cure
I’ve lived with chronic illnesses for 30+ years. So many illnesses, big and small, and more doctors than I could possibly remember. I’ve coached and written about communicating with your doctors. I thought that I had talking to my doctors down. I thought I knew what to ask and how to get the information I’d [...]
Disclosure? The big question.
If you live with an invisible chronic illness, you probably find the question: When do I talk about it for the first time? — is on your mind, a lot. That would be true with any relationship but particularly at work – where performance is key. When I wrote the chapter about disclosure for our [...]
“What we’ve got here is a failure to communicate.” Cool Hand Luke I bet that if you live with a chronic illness you understand what I mean when I say: The single most difficult issue that I’ve faced living with chronic illness hasn’t been feeling lousy or having pain. It’s been knowing what to say [...]
Coming Out – Into the spotlight
Occasionally, I interview people about their “story” because I think it would be valuable for you to hear a different take on these issues – other than mine. Today’s guest is Leslie Rott. She is 22 years old and was diagnosed with and is being treated for rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE) [...]
