Working the Rheuma
When you first get your diagnosis of rheumatoid arthritis or even when your symptoms start to really effect you, one of the first questions you ask yourself is, ‘how do I continue working with rheumatoid arthritis?’I suppose this all depends on the kind of work you do but generally, even the fatigue alone, will affect your employment in one way or another.
What I do
I am a special needs teacher. I work in a special developmental school with students with an intellectual disability and most of whom have autism. It is hard work, it is demanding work but it is so rewarding. I really enjoy my job even though it is very physically and mentally draining, particularly because I am working with small children.
I am on my feet all day and have usually clocked up 10,000 steps by midday. The nature of my work also involves me using my hands all day to physically assist students to walk, eat, pick things up, go to the toilet and play. When you have RA, this is really challenging because frequently, your hands just aren’t willing to do what it is you need them to do, when you need to them to do it. It’s also really hard for my co-workers who have to pick up my slack because there are some times when I can’t bend over to tie someone’s shoelace, open up a packet or hold someone’s hand.
One of the most embarrassing thing about being a teacher and having RA is that I struggle to write. I’ve always had pretty bad handwriting but since RA, I can barely hold a pen and when I try to write, it’s basically a horrible scribble. I often get asked if I let one of my kids fill out my forms. Errr yes, yes I did.
What my body won’t do
When I first got my diagnosis, I was really concerned as to how I was going to be able to keep working with my rheumatoid arthritis. I could barely use my hands and there was no way known I was going to be able to get on the floor with my students. My main concern was what would happen if one of my students grabbed me or pulled me onto the floor which happens frequently. THAT, I knew, was going to hurt like hell and going on work cover was not very appealing especially for someone who prided themselves on being strong and feeling invincible. But pain like that, you can’t suck that up. Rheumatoid arthritis pain makes you want to curl up and cry. Cry at work? No thanks. I’ll leave that to the children.
So how do I do it? Well, I don’t. I don’t get on the floor with my students and I remove myself from situations where I might get hurt. I’m all about self-preservation. I am my first priority and I am not going to apologise for that. Just because I can’t do some things at work doesn’t mean I’m doing nothing but I am adjusting and modifying my work place to suit my needs in order to continue to work to the best of my ability. I also use compression gloves for added support and so people are more consciously aware.
But you don’t look sick!
As anyone with rheumatoid arthritis would know, it’s really hard to explain your symptoms to those that don’t have RA or how Rheumatoid Arthritis affects your body. My colleagues are largely supportive but they don’t really know what it means to have RA or what working with rheumatoid arthritis is like. I mean, I could be walking perfectly one moment but then all of a sudden, my left ankle decides that it’s not going to co-operate causing me to limp. A minute later, same thing happens but now it’s my right ankle. You live life like a voodoo doll but to those on the outside, you look like you’re faking it. It’s true what they say, rheumatoid arthritis is an invisible condition because you look fine but do you feel fine? Hell no!
So tired of this!
The fatigue was what affected me the most. Working with rheumatoid arthritis and dealing with the fatigue is extremely difficult especially if you work in a demanding job. I found that by the time I got up in the morning and got my kids and I ready for work and school, I was spent. Knowing that I still had a full days work ahead of me was just so depressing and by 10am I would be ready to call it a day.
For the first few months of my diagnosis and while waiting for the meds to kick in, I slept every opportunity I could. During morning tea and lunch break, you would find me napping either in my classroom or in my car because I had to. When I got home, I’d collapse on the couch for at least 2 hours. If I didn’t have kids, I would have gone straight to bed. Unfortunately, I had to get up to make dinner, help with homework and taxi them around. You can read more about how I deal with rheumatoid arthritis as a mother here.
Fortunately for me, I have a really understanding employer who is very sympathetic and offers support which I know not a lot of people get. It makes a huge difference and certainly lessens the stress. Working with rheumatoid arthritis is tricky but it’s important to know your limits and not to push yourself further than what you can manage.
I acknowledge that many RA warriors out there have to stop work, retire, change careers or even claim disability benefits due to their RA. The impact of not being able to work and/or going on social security benefits on your mental health could be devastating. It is so important to have a good support network when you have RA and if you need one, you can get support in The Rheuma Room.
During this Covid-19 time, I have found the thought of returning back to school and working with rheumatoid arthritis really stressful but lucky for me, I qualify to work from home due to medical reasons. The impact of this on my body though is actually worse because instead of interacting with small children everyday, I now have to sit at a desk in front of a computer all day. You just can’t win!
If you are stressed about returning to work, it’s really important to be open about your needs. Communication with your employer is crucial and support from your rheumy is also really helpful to back you up. I also think it’s perfectly okay to play the ‘I have rheumatoid arthritis’ card whenever you need to. It’s a legitimate reason so don’t feel bad for using it. If you have an upcoming appointment with your rheumatologist, go here to get tips on how to make the most out of your appointment.
I have a growing collection of extra resources that may help you. From mental health resources to how to earn a passive income.
How has working with rheumatoid arthritis affected you? Leave a rheuma and share your experiences on The Rheuma Mill now, it may help a fellow warrior!
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