First off, my apologies for being off the radar for, well, months.
My work has been busy and I’ve been trying to finish up my second novel. (If anyone has any interest in checking out my first book, you can find it here.)
It’s left me with little motivation to write this blog after busy days that include a lot of time in front of the computer. In fact, I’ve spent many nights these past few months just being exhausted and having a great relationship with Netflix.
On to the good stuff.
I was recently at a dinner and found out through that a person close to me might have Lyme Disease. I was listening to her symptoms – sore joints, fatigue, depression – and told her I understand how a lot of these symptoms feel and that she should call me if I want to talk.
To which she responded, “But you’re better, right?”
She’s not the first person I’ve heard this from. I’ve heard it from friends and family, those who should really understand chronic disease better. And I get it. They see me and I look healthy — I go to work, get exercise, write, travel. I don’t complain like I used to before I had a diagnosis.
I’m better, right?
Well, not exactly. “Better” suggests “cured” and I think that’s how most people mean it. But in the world of chronic disease and Rheumatoid Arthritis, cured is not really part of our reality (Yet! So much exciting medical research is happening right now!).
So how can you balance educating people, but not causing those close to you worry -OR- come off as complaining?
Honestly, I’m not sure.
I responded by saying that my drug therapy allows me to manage my disease and I feel much, much better than I did before treatment. This is the truth. I balance pain, fatigue, new limits, and, yes, even depression from time to time. I tweak my drug regimen constantly to take the least amount of drugs possible while managing my pain. I take two heavy-duty drugs weekly just to keep a semi-normal life and I get blood panels regularly to make sure my liver’s keeping up.
I don’t feel cured, but I do feel better.
So, what about you? How do you handle the “Aren’t you better yet?” line?
Hopefully we all respond better than this to the “feeling better” question! I just thought this one was funny!
My RAD Life 
#1 by Cammy Goldmann on September 10, 2015 - 5:34 am
I absolutely understand the frustration of someone saying “but YOUR better aren’t you?” And I feel exactly the same about answering that question. I just wanted to tell you that I over the last 6 months have lowered my dosage from 8 methotrexate pills on Mondays to 2 and the Enbrel injection each week on Tuesday and so far so good…Blood Test in 2 weeks and hopefully both liver and inflammation is under control! I look forward to reading both of your books!
Hugs
Cammy in Cali
#2 by My RAD Life on September 13, 2015 - 9:46 pm
Congrats on going down on your meds — that’s fantastic!! Good luck on your blood tests!
#3 by Kat Elton on September 20, 2015 - 12:17 am
I had to laugh when I read this one, because I still, after 44 years hear this from friends and loved ones when I’m doing “well.” I really think, though that they say this because they want us to feel better, the idea of being in pain 24/7 is tough to take for loved ones….
#4 by My RAD Life on October 1, 2015 - 1:57 am
Oh yes, I agree it comes from a good place. That makes it all the more hard to know how to respond because they’re so hopeful that you’re better! It’s hard to disappoint them with a “well, actually it’s a chronic disease…”