As my solo departure for a distant land approaches, I’m reminded of the inevitable questions I’m asked when strangers notice the manifestation of my constant companion Arthur: my dodgy hands and feet.
Don’t get me wrong, I’d rather people ask me questions than stare because they don’t want to be intrusive or offend me. I get a bit paranoid when people stare.
So just in case you’re curious, these are the answers I usually give to the 10 questions I’m most asked about my experience with rheumatoid arthritis (RA):
1. Does it hurt/do you get much pain?
Pain has different degrees. I always have some degree of pain, usually minor, which I can ignore. For example, if I let myself think about it, the ball of my foot behind my big toe feels sore where it rests on the carpet but it’s not worth whingeing about. Luckily I don’t have too much pain of the highest degree where it hurts to breathe, move or get out of bed, let alone whinge.
2. Do you take any drugs?
I’m on that many pills and complementary medicines to minimise pain, swelling, stiffness and deformity it’s lucky I don’t rattle when I walk. I’ve been taking a combination of methotrexate, plaquenil, prednisone, arava, folic acid, actonel and somac for quite some time. My rheumatologist and I have discussed switching to biological drugs if/when this combination is no longer effective in controlling my RA.
3. Have you tried alternative medicine/therapies?
Yes. Not long after I was first diagnosed with Juvenile RA in the late ’70s, my parents took me to a specialist in Chinese medicine for an alternative treatment to the 12 dispirin a day prescribed by my GP. They were worried about the serious side effects of taking so many painkillers. Arthur was content on the herbal concoction for a long while but after a serious flare-up, my mum sought help from another GP. In consultation with the closest rheumatologist 500km away, Arthur was brought under control with a combination of steroids and non-steroidal anti-inflammatory drugs.
I know every medicine has side effects but for me the risks are outweighed by reduced pain, swelling, stiffness and deformity. I keep informed about the drugs I’m taking and have regular check ups with my specialist. Some people swear by non-medical treatment but I’d need more proof of its effectiveness before I quit medication that is working well for me.
4. Are you on a special diet?
No. I’ve heard ‘nightshade’ foods such as tomato, potato, eggplant or cucumber can aggravate RA but over the years I’ve had no problem with anything edible. I try to eat healthily from all the food groups. Of course if research proves certain foods are better avoided, I’d change my diet.
5. Aren’t you a bit young to have arthritis?
Granted I don’t get asked this as much as I used to because I fit the stereotype of a person with arthritis, i.e., older, but this was a common question back in the day. RA isn’t ageist. It can affect anyone from newborns to the elderly.
6. How long have you had rheumatoid?
This usually necessitates a quick mental subtraction of 9 from my current age. So, as of today, it’s 37 years.
7. What’s the difference between rheumatoid arthritis and ‘normal’ arthritis?
There’s no ‘normal’ arthritis because there are more than 100 types. The 2 most common are osteoarthritis and rheumatoid arthritis. Osteoarthritis is caused by joint wear and tear, which weakens cartilage. Rheumatoid arthritis is an autoimmune disease where the body attacks and destroys joint cartilage. Both types have common symptoms, including joint paint, stiffness and swelling.
8. How did you get RA/what causes rheumatoid?
I don’t know how I developed RA. It’s thought RA may be genetic and is triggered by environmental factors such as a virus, infection or smoking. Research into a cause is ongoing, including at the University of Queensland’s Diamantina Institute.
9. Is it hereditary?
Studies have shown RA is likely to be hereditary. But in my case, I’m the only lucky one on either side of the family, in 4 generations anyway, who has RA.
10. Is there a cure?
No. Not yet but with the treatments available nowadays, most people lead a normal life and it’s unusual to see deformities like my dodgy fingers and toes.