So I had to have the conversation I’d been avoiding with my boss last week – the one about my attendance. I have 10 sick days this year since January and last week I left work early every day to go to various appointments.
To say I was anxious or afraid of what would happen in that discussion goes without saying. I know that I have been accommodated to an extent without question but I believe at this 8 month point, everyone’s patience with me is wearing thin.
While I have more than made up for the time I take for my appointments the sick days have not gone unnoticed. According to my boss people were starting to talk and question my absences. You see, as much pain as I might be in, as much as I might tweet or blog about my discomfort, if you were sitting beside me at work, you’d never know. The worse my pain, the quieter I become about it. I’m stoic in my suffering – always have been. If things get really bad, I take a few minutes and hide in the bathroom or whatever else I need to do so the people around me don’t see me as weak or vulnerable. I don’t talk about what RA has done to my body or my life; I go to work, try to make nice, survive the day and leave my personal life far away from others. So at the end of my conversation with my boss she suggested I explain to those around me what I’m actually going through to help them understand.
I didn’t want to and I certainly didn’t want to have a face to face – too many people for me to handle at once…so a friend suggested I write them to explain. Here’s the email I sent:
First, I wanted to say thank you to everyone for being patient with me over the last few months. I know my absences mean that others need to pick up my work sometimes to ensure that things are completed. I’m glad that everyone has been supportive and I hope that I haven’t put too much pressure on you.
I know that I haven’t spoken much about what’s been happening with me. I am, in many ways a very private person, and I don’t want people to feel sorry for me or worry too much about me.
Since January I have been dealing with Rheumatoid Arthritis (RA). The first PDF I attached probably explains it quicker and better than I ever could.
Diagnosing RA takes quite a few tests and exams to rule out a bunch of auto-immune diseases that are kind of similar.
Until RA has time to progress it’s generally an invisible disease. I’m sure most days you look at me and I seem just like every other day. In a way it’s good, I haven’t reached a point where any major damage has been done to many of my joints but it also allows people to forget that I am in pain or tired and that I have a serious chronic illness.
Now that I have my diagnosis I am working with my doctors to try to stabilize the RA. This unfortunately has meant many appointments and follows-up. I am lucky I have a really good GP and Rheumatologist.
Unfortunately, my RA is aggressive and we haven’t found the right combination of medication to put it into remission. This means I am often in a lot of pain and feel quite exhausted. Over the last few months, when I have been off sick it is because I haven’t been able to physically make it in because of the pain, the stiffness or just being so unbelievably tired (the best way to understand it, is to think about when you have the flu – you just have no energy). On days like that the best thing to do is rest and try to manage the pain. Believe me when I say this, no one wishes more than I do that I was at work everyday.
When you’ve asked how I was feeling and I said, “fine” or “better” it was because I didn’t want to get into the details and I realise that in some ways because of what’s been happening lately that’s unfair. If you have questions or want to talk about it we can.
These last few months have been especially hard. In some ways the medication is almost as bad as the disease but this past week all my appointments have been for tests and vaccines to make sure I’m ready to start a new drug which will try to suppress my overactive immune system. Unfortunately that also makes me more susceptible to infection. I’m hoping this works. And with any luck I’ll be feeling better soon and I won’t need to see so many doctors and nurses and all other manner or medical professionals and I won’t need to take time off work.
The second PDF kind of explains what it’s like to have an auto-immune disease. While I don’t have lupus the concept is quite similar. Some days doing the simplest, everyday tasks can be exhausting or impossible – I have to pick and choose.
Thank you again for being understanding and accommodating, hopefully I will be back to “normal” (are any of us normal?) soon.