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Arthritis Wish List

What People Wish They Knew About Rheumatic Disease

Arthritis is a misunderstood disease. Much of the general population believes it just involves achy joints and only happens as we get older. In reality, it’s 100 conditions that impact people of all ages, including children. Given the widespread misconceptions, it’s no surprise that many are shocked and overwhelmed when diagnosed with incurable, life-changing types of arthritis.

What doctors do I need to see? What are the risks and benefits of different medications? How long does it take them to start working? Why do I feel so tired? Will I go into remission? Will I be able to keep working? Will I ever get back to the life I once knew? How can I learn more about my disease? How can I connect with other people living with my type of arthritis?

The questions and unknowns are endless in the early days. Life with arthritis can feel busy, overwhelming and incredibly lonely – all at the same time. And while patients have medical teams to address concerns about symptoms and treatment options, many look back on their first few years and say, “I wish I knew x when I was first diagnosed.”

We asked members of Arthritis Research Canada’s Patient Advisory Board to reflect on their early months and years with arthritis to provide some insight for people who are newly diagnosed. Here’s what they had to say:

Symptoms

Keeva was diagnosed with rheumatoid arthritis at age 30. She wishes she knew that symptoms involved more than joint pain and that they can affect a person’s social life.

Annette wishes she knew rheumatoid arthritis can affect a lot of different joints. “I wish I had known about how it affects the jaw and neck. I often complained to my dentist about jaw pain, but he just said I must be grinding my teeth.”

Pippa lives with systemic lupus erythematosus, the most common type of lupus, and says, “I wish I knew my condition can present itself in a lot of different forms and affect a lot of different organs, and so my ‘chronic illness’ of lupus can look very different from one flare to the next.”

Medications

Looking back, many wished they knew more about their medications before starting them.

Alison reflects on how she would have liked to know that it’s normal for rheumatoid arthritis medications to take a long time to start working.

Natasha, diagnosed with juvenile idiopathic arthritis at 13, said, “I wish I knew more about the medications that I was going to take, as well as the short-term and long-term side effects.”

Kelly, who has lived with arthritis for 26 years, also talked about medications. “I wish I had known more medications and treatments were on the horizon. I ran out of choices a couple of times.”

Disease Management

Keeva talked about how she found advocating for herself challenging at age 30 when diagnosed with rheumatoid arthritis after having no prior health issues.

Natasha said, “Overall, I wish I had more ways to learn about my disease through clinic visits and recommended resources when I was first diagnosed.”

Annette said she would have liked to know more about the comorbidities, or other diseases and complications, which come with rheumatoid arthritis and how to prevent them. “I wish someone had warned me in the first few years that rheumatoid arthritis is a risk factor for osteoporosis. It seems obvious that a joint and bone disease would have that effect, but there was a lot to worry about then. I could have been taking calcium and vitamin D from day one.”

Kohle, diagnosed with hip osteoarthritis at 27 after experiencing symptoms since 25, said, “As a young adult, I wish I knew more about what my diagnosis meant, and the resources available to me. In my experience, clinicians, particularly physicians, don’t have the time and generally aren’t willing to walk you through what being diagnosed with osteoarthritis at 27 means for your future, especially considering I’m atypical for this condition at such a young age with no clear cause.”

Alison said she wishes she knew “That it is helpful to track your symptoms, including fatigue, and see how they seem to interact with medications, activity, rest and stress.”

Pippa feels the same way. “I wish I had learned earlier how effective and helpful certain strategies can be for supporting health and quality of life, such as using symptom-tracking charts, journaling, learning to read and understand lab work results and reports, active participation in treatment discussions and decisions with care teams, identifying certain friends/family members as health allies/advocates, getting involved in patient groups, and taking part in research.”

Samantha, diagnosed with juvenile idiopathic arthritis as a child, wondered about remission. “I wish I knew that disease inactivity is part of arthritis, maybe it was because I was a kid, but I constantly thought, or maybe hoped, I was misdiagnosed because sometimes I wouldn’t feel it.”

Life with Arthritis

Natasha wished for more support in the beginning. “I wish that I was given tools for pain management strategies like physiotherapy, and lifestyle changes such as diet and exercise.”

Keeva said, “I wish I knew I wasn’t alone in grieving a life I could no longer have. I also wish I knew about patient groups to feel empowered.”

Pippa said it would have been useful to know that patients can quickly and easily access subsidized counselling and mental health support that would take into consideration concerns associated with living with a rheumatic condition.

Kohle felt a need for more support. “Receiving an osteoarthritis diagnosis at a young age had me constantly asking myself, ‘now what?’ With few knowledgeable people in my life to turn to, I was fortunate to find Arthritis Research Canada after doing a Google search. The information and people I was able to connect with helped shed light on my diagnosis.”

Ongoing Questions

Managing arthritis is a lifelong job. For this reason, many people on Arthritis Research Canada’s patient advisory board still wish to know more about their diseases – even after years of managing symptoms and navigating life with chronic illness.

Keeva wants to learn how to take a holistic approach to life with rheumatoid arthritis – one that includes work, life, food, exercise changes and more.

Alison wishes for more precise guidelines on the minimum amount of physical activity to undertake, the optimal amount and what is too much, rather than vague generalities.

Several people are also curious as to how their arthritis will impact them as they get older.

Samantha talks about what the future will look like for people like her, who are diagnosed with rheumatoid arthritis at a young age. She also wants guidance on aging with arthritis. “I joke that I want a ‘guide to aging’ so I know which symptoms are part of common aging, and which ones are a result of my arthritis.” She adds that she recently learned that rheumatoid arthritis can affect a person’s vocal cords, there is a relationship between arthritis and gum disease, and that inflamed ribs can cause chest pain.

Keeva wants a roadmap to help her navigate the next five to 10 years with rheumatoid arthritis. “I want to know what to expect, what to plan for and how to mentally prepare. For example, will I be able to continue my current job? If so, what should I do now to make the next five to 10 years easier?”

Kohle wants to know how long his hip replacement will last, but realizes this varies from person to person and has had to learn to live with uncertainty. “My care team didn’t, and still doesn’t, have exact answers for me about how my hip will fare over the coming years. And that’s okay. I have come to realize that the uncertainty is tolerable, and it is part of the hand that I was dealt. I strive to stay as positive as possible and recognize that I am very fortunate for all the good things in my life.”
And Annette wants to understand the long-term impact of arthritis medications – an evidence-based summary and not a list of scary anecdotes.

Life with a chronic condition is an ongoing learning experience. While medical teams can be a great resource, connecting with other people who have arthritis and learning about arthritis research going on behind the scenes, can be extremely helpful too.

What do you wish you knew about arthritis? Please consider filling out our survey. Your questions might become the topic of an Arthritis Research Education Series episode!

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