February is Arthritis Awareness Month, and today is Rheumatoid Arthritis Awareness Day. Rheumatoid Arthritis (RA) is a form of autoimmune arthritis, meaning that the body’s immune system attacks and destroys/damages joints in the body–organs may also become involved, and the disease is progressive. While treatable, RA can have both profound–and variable–impact on a person’s life. Today, Annette shares some parts of her arthritis story to raise awareness about RA.
KM: Hi Annette! Thanks for sharing your story on MyIdentityDoc today. Tell us a bit about yourself, and your arthritis story.
AM: I was 32 when I was diagnosed with Rheumatoid Arthritis, and my two sons were 10 and 11. It was hard on them because pain and fatigue took too much attention away from them for years just when they needed me. My arthritis came on fast and affected everything in my life. Huge pain especially in the morning, and so much fatigue I used to need to take a day every week to rest and do almost nothing. I was also losing weight, but at the time I was convinced it was because I switched to diet pop.
While this was happening I had a doctor who seemed to think I was ‘hysterical’. My visits made me feel like I was going through a revolving door each time. Finally he said “Take 12 aspirins a day and come back in 3 months.” That did not work – I tried another doctor with poor results too. Finally after 1 ½ years of symptoms I went to an orthopedic surgeon and got a diagnosis.
After diagnosis I was depressed – as that began to lift and I could not be active or go out in the sun much because of the medications, I started to enter contests as a hobby. Success at that made me a lot more optimistic in general. The physical demands working at the bank had left me looking for a job that required less physical effort, so I ended up as a partner in a market research fieldwork company. Every new project was like a puzzle – as a fan of mystery books from childhood I liked solving problems so it was a great job. That went on for 20 years.
Just 10 years ago I also developed Sjogren’s Syndrome – often if you have one autoimmune disease, you are likely to develop another
Aside from your career change, how have things changed for you since your diagnosis—how has your treatment changed in that time?
My life changed with chronic disease. The delay in good treatment at the beginning left me with damaged joints that continue to get worse over time. Treatments are much more effective now than they were then (30 years ago), and now RA is recognized as a medical emergency. I am recovering now from my 9th joint surgery to repair joints in my hands, feet, and neck. I take a variety of drugs for RA–one is an expensive and more effective biologic drug.
The Treat to Target strategy is more effective for patients, as is the idea of shared decision making. I no longer have the same faith in the medical profession that I had then. Access to high quality information is much easier now – I can find out almost anything on the internet and through social media.
What do you wish people understood better about rheumatoid arthritis?
Really, that would be the medical emergency aspect. People should realize that RA is a serious life altering disease.
Please don’t show me your little finger joint and tell me you have arthritis, too. If you give me herbal pills I will smile and thank you, but I’m unlikely to take them. You can keep your gin, raisins and apple cider vinegar.
I’d like to second that for nearly all of of us with chronic disease! Have you become engaged in any online patient communities? How has that helped you—or hindered you—living with RA?
The first thing I did when I got a computer was join some health support groups online. I’m still a member of 2 of them and it’s great to have people to talk to who ‘get it’. By the time I was getting symptoms of Sjogren’s I was able to find advice and support quickly through Sjogren’s World, so I knew all about treatment and symptoms before I even talked to my rheumatologist. …now I am on the board of the Sjogren’s Society of Canada.
Social media made a difference to me. Once I retired and started to blog I noticed live Tweetchats and started to really enjoy meeting and connecting with people all over the world through Twitter. It’s great to be able to participate and volunteer without having to be there in person. Now patients have more choice about how to be involved.
Anything you’d like to add or tell people about yourself or your experiences?
Through my life there have often been issues that I have felt strongly about. From municipal politics leading to the overthrow of the incumbent, to a fight over a local development project, to starting a union in the bank I worked in, there have been causes.
Now I am passionate about the voice of the patient being meaningfully embedded in healthcare, especially when it comes to decision making. Patients are the largest stakeholders and need to be on the team. That was the biggest lesson from the IDEO Design challenge at MedX.