Bending down to get a saucepan out of the drawer. Pain.
Straightening my arm to put up my hair. Pain.
Turning on the tap. Pain.
This was my reality and I had no idea why. Then at the age of 22 I finally had the answers - I was diagnosed with rheumatoid arthritis. I'm 30 now. And, as a social worker, I’m really conscious of the detrimental impact this disease can have on people’s mental health, relationships, family, and finances.
I read a post recently that I found incredibly fitting for my community: “Those with chronic illnesses are not faking being sick; they are faking being well”.
Essentially, my body attacks healthy joints. Every day I have to take medications and every two months I have to have my right knee drained of fluids with steroids.
But this isn't just a knee problem, this is a whole body problem. I was told “you will be on medication for the rest of your life” and “never fall pregnant on this drug.” That was back when I was diagnosed. Eight years down the line, the reality is I probably won't be able to conceive and have a baby naturally, or through other means. Some women do fall pregnant with this disease but because of my rheumatoid arthritis, in addition to other complexities and areas its impacted, it may not be possible. Also trying to carrying a child with bad joints raises its own set of problems.
Toniele's right knee pre-surgery with excess tissue and fluid. Source: Supplied
Over the course of three years, I tried four different drugs; none of which improved my condition. The drugs I was on are in the same family or chemistry as chemotherapy so they are extremely strong. I would pass out alseep for hours after taking a dose. I finally said “no more medication” when I woke up one morning to literal clumps of hair on my pillow.
I have learned this auto-immune disease can affect your lungs, heart and eyes and this is very much a terrifying reality for many of us. Every fortnight I now inject biologic medication: protein-based drugs derived from living cells grown in a laboratory. The fatigue and pain however, which many people don’t realise about this disease, doesn’t leave my body.
Those with chronic illnesses are not faking being sick; they are faking being well.
The fatigue is crippling and like many others, the levels of inflammation in my body have impacted me on every scale – mentally, emotionally, physically, and in planning for the future. I've had to find my identity again. I went from juggling swimming, touch football, netball, running and working 40 hours a week to not being able to do anything. It's only in the last six months that I'm beginning to find the 'new' version of myself.
I don’t take each day for granted. I have met others with far more severe disease progression and it breaks my heart. Some days are very difficult and I am aware some people’s conditions are so far advanced they cannot work. I still work and surprise myself with my capacity at times, which I can only attribute to my faith, healthy lifestyle and the support of those around me.
This autoimmune disease needs to be considered for what it is - a complex disease and not simply just an arthritis. Arthritis comes with so many connotations and associations that do not fit, such as “only the elderly get arthritis” or “you’re too young for this”. Rheumatoid arthritis is certainly not cured by taking fish oil, or applying the newest hand cream, the disease is far more progressive than that so a little bit more compassion from the wider community goes a long way in helping us get through each day.
