Interview Diaries - Living with 'RA'
Hello everyone, this is an interview with @Clio9876 about what it is like ‘Living with Rheumatoid Arthritis (RA)’.
Clio, thank you for taking the time to answer our questions so we may better learn and understand what it is like to live with ‘RA’ Rheumatoid Arthritis every day. It is our pleasure to find out more.
Can you tell us about how and when you were diagnosed with RA?
About 15 years ago. I was a very "outdoorsy" type person, with an active outdoor job. It started with really bad inflammation of a tendon in my hand, to the point where my finger would be locked bent. By the time I'd been referred and diagnostics completed, I could barely walk round the block with my dog in the evening , having been used to going several km each night.
How has RA affected your life since then?
I am lucky compared to some. My RA is well controlled by medication. I've had to learn to slow down and pace myself a bit. But I can still work and look after my garden and walk my dogs. I take less risks - I used to do things like go down the stairs two at a time. I'd never do that now. I take the lift when I could take the stairs. I only buy pans with two handles, so I can lift with both hands. I dread the person with the robust handshake. I've had to accept that a greater proportion of my life will be spent in doctors waiting areas than the average person. But mostly I try hard to make sure it affects my life as little as possible.
What are the worst parts of having RA?
That it gets confused with osteo-arthritis. I call my disease RA, never rheumatoid arthritis. Because as soon as people hear the word "arthritis" they say "oh, I've got that". Everyone over the age of 35 has osteoarthritis. It's part of ageing. I have osteoarthritis. But I have RA too. RA is an autoimmune disease. My immune system attacks my joints. Without medication, my body would be in a constant cycle of self destruction and repair. So while the primary symptom is pain, the second is flu like exhaustion. I didn't realise until I got this disease, that the exhaustion of flu is as much the energy costs of repair, as fighting the virus itself. Building bodies is energy intensive. Babies and teenagers can tell you all about how growth demands sleep.
That RA is an invisible disease. You would not know I had it. I forgive people giving me dirty looks when I'm sat on the priority seat on public transport and I don't get up for someone who is pregnant or elderly. Also those that might laugh at me for wearing sandals with socks. When shoes are too painful and sandals too cold in winter, I'm wearing sandals with socks.
The unseen costs of disability. I'm lucky now to have a well paying job. But there was a time when I was low paid. I'm also lucky that I live in a country with public health care. (I'm immensely saddened by the stories of people who have RA and have ended up with preventable deformities because they couldn't afford the medication I take. Or have ended up addicted to opioids, because pain medication was cheaper.) But there are lots of small unseen costs to a disability that add up. My budget at that time meant I had the money for one extra per week. An item of clothing, a pot of paint for the house etc. After I was diagnosed that went on essentials for my condition, like fuel for the car to get to medical appointments, better quality gloves to protect my hands from the cold, better quality shoes, walking poles etc. Simple stuff, but stuff I couldn't really afford.
How can we help to support someone with RA?
Install a bench for passers-by. When life is like walking around with 5 marbles in your shoes, I quite often find myself sitting on the pavement from lack of other options.
Don't be like me. I was the healthy naive idiot who never needed to visit the doctor and thought people who took drugs were falling for health care that was too focused on treating symptoms. When your choice is a lifetime in bed or drugs to treat the symptoms, you will take the drugs.
Don't judge people on looks. I think people on this site are better than most at this, but I know and I still need the reminder.
What else would you like to share with us about your life with RA?
Disability isn't fair.
We all have troubles.
No one would choose to add another.
I consider myself lucky in the disability lottery.
Thank you for answering our questions, it has been really interesting and a pleasure to find out more about living with ‘RA’. We are glad that you are an active part of our Community!
Resources:-
NIAMS on Rheumatoid Arthritis Offers detailed information on the causes, symptoms, diagnosis, and treatment of RA.
Mayo Clinic - Rheumatoid Arthritis Provides a thorough overview of RA, including symptoms, causes, risk factors, and treatment options.
NRAS A UK-based charity offering support, information, and advocacy for people with RA.
These sites offer valuable resources for understanding RA, managing symptoms, and connecting with others who have the condition.
Interviewer was @MistyMagic
