We All Agree

I have a lovely new rheumatologist. She ticks all the boxes. But there were things not done that should have been done. Appointments scheduled that never were. Links sent which never came.

But I brushed it off. Kinda.

Then earlier this week, Dr Rheumy herself sends a voice note via her office manager. Now, this is something the second rheumatologist also did- where there’s only one email address that both rheumatologist and office manager access. No direct line of communication with my doctor at all. I didn’t think much of this at the time until the voice note.

In it, Dr asked how I’ve been doing on Enbrel, and suggested that a rhizotomy might be the way to go for pain control. She also asked about the pulmonologist etc.

I then responded to her question. I told her I’m NOT doing well at all. I’m in pain. I sometimes limp. I even gave specifics of when the pain becomes unbearable. I was honest, vulnerable and real. I told her I’ve even added my own pain medication to the prescribed one and I’m still suffering daily.

I also added that I’ve become less mobile since August but i acknowledged that I’d had five weeks of the injections then a break, a week on, then the break thanks to surgery. So who knows..? Maybe I’d feel better without the breaks?

Guys, no doctor had ever checked on me and asked how I am. And remember, she is the rheumy who added pain meds (Which I sadly had to stop thanks to my wonky kidneys) without my even mentioning during our face to face that I’m not coping. I sent her voice note to close friends, showing them how blessed I was.

Wow… A response came from the office manager. Basically, she said-This is the TONE we ALL got from her response , “You need to have been on Enbrel for a full three months before deciding you feel terrible on it, you idiot. Other patients are doing well on it so you have no reason to feel otherwise. Wait till you have re-started and have been suffering for another three months and THEN get back to us and start whining.” (The parts in italics are the TONE we got from this short, uncaring, cold, dismissive email.)

I asked my fellow brown people. I sent them the voice note, my response to it, and the admin’s response. I sent it to my white people. We all agreed. This office manager woman is dangerous. Firstly, does the doctor know she responded to my email? Did the doctor herself READ my email? Or did this woman delete my response to her? Why is she talking to me like I’m impatient? I myself mentioned that I do realise I’ve taken a break. More importantly, I didn’t just suddenly write and ‘complain.’ I didn’t even MENTION that Enbrel might not work for me. (Which it definitely might not! Duh!) I was replying to a question asked by my doctor.

Where does she come in?

I waited in vain, hoping the doctor would respond. After all, this was on the back of her having contacted me to ask how I am. And she had mentioned a possible solution to the pain.

Now, I don’t know that she got my reply. I don’t know anything except that we all agree that I’m not safe there. It’s so bad that my other acquaintance of the paler persuasion even spoke to her mom about the office manager’s cold hearted, patronizing tone and begged me to see her mother’s rheumatologist who is quite far from us.

I wish I could say that I was imagining this. But I’m not.🥹I sent the communications as they were, and everybody saw it. I didn’t even need to justify why I was sending it or argue my case.

They saw it.🥹

What are we meant to do??? If I was in Joburg I know where I’d be looking. There’s one type of doctor where I’ve ALWAYS been treated wit respect and kindness. Where both the office manager and the doctor have both been guaranteed to see me, an adult with big problems. And sadly, there’s no rheumatologist in our province who belongs in that grouping.

I told my acquaintance that she can suggest her mom’s rheumy, but she isn’t like me. So they need to find out if people like me are treated with dignity.

What will I do in the meantime?

I’ll ask the office manager and the doctor (whoever happens to read the email first) to send me to someone who won’t respond to me the way I was responded to. This is a lifelong disease. I need to know my health, life, care is safe with whoever I’m paying to keep it as safe as possible.

Wish me well. To ignore me when I’m crying out, is despicable. I’m thankful for the ones who can’t let it go/forget about it even days later. Because I too can’t. Knowing I’m not alone helps a LOT.