Laurie Proulx of The Canadian Arthritis Patience Alliance

Laurie believes wholeheartedly in the voice of the patient through her work with the Canadian Arthritis Patient Alliance (CAPA). Diagnosed with juvenile idiopathic arthritis at 14, she is now a veteran and expert in the disease. She is the proud mom of two of the sweetest kids.

CAPA uses the power of information, research, and communication to help people living with arthritis find their voice and support others. The Canadian Arthritis Patient Alliance (CAPA) works with various groups in the arthritis community to ensure the voice of people living with arthritis is heard and to bring you up-to-date information on issues that affect the arthritis community. They work with healthcare professionals, health organizations, clinicians, industry, health charities, researchers, and various levels of government.

Their mission is to:

Improve access to medications, health care professionals, and services.

Increase patient involvement in arthritis research and policy agendas.

Understand and influence  research and treatments.

CAPA helps keep Canadian people living with arthritis and their support groups understand more about their disease and have a voice in managing it.

Here is Laurie’s interview for The Pain Files and how she became a passionate arthritis advocate.

What disease/conditions do you have?

I live with Juvenile Idiopathic Arthritis (previously known as Juvenile Rheumatoid Arthritis). I was diagnosed at the age of 14. I also live with some of the systemic manifestations of the disease, like hypertension (diagnosed in my 20’s), breathing impairment in my upper airway (yes, there are joints in there!), and Sjogren’s syndrome.

How were you diagnosed?

It took about 9 months to get a proper diagnosis. At first, my family doctor didn’t think there was a problem and my Mom kept taking me back to see the doctor until she managed to get a referral to a rheumatologist. It was an adult rheumatologist so I didn’t actually get seen by a pediatric rheumatologist at the Children’s Hospital until I was 16. That’s when I was put on a stronger DMARD and managed to get a part of my life back.

What are the treatments?.

I’ve been on everything from conventional synthetic DMARD’s to many biologics. I’ve been on pain medications too like NSAID’s pretty much since I was 14 years old. I’ve had 8 surgeries for my JRA, including a tracheostomy and two forefoot reconstruction surgeries in 2017 and 2018.

Have you had any adverse reactions to medications or treatments?

Oh boy have I ever! I have had more minor reactions like nausea and vomiting, to more severe reactions like sepsis, cellulitis, and even severe vomiting lasting for hours due to a conventional synthetic DMARD.

Can you explain a time a doctor/health professional did not help you?

I remember a particularly bad situation when I was about 15 years old. I went to a rheumatology appointment on my own (chalk it up to adolescent independence!) and my physician just pushed his way through the appointment. I come out of there with a joint injections I didn’t want, and with no clear path to improving my persistent pain that is affecting my ability to participate in school. There was my first experience into what ‘shared decision-making’ is not and why sometimes people with arthritis don’t take their medications. I felt completely medicalized, and that I had no say in my treatments and my future. It’s a pretty tough experience for a 15 year old and is a good example of why I advocate for people living with arthritis. 

Can you explain a time when a doctor/health professional did help you?

There have been a lot of great experiences particularly in more recent years. Usually I prepare for my appointments with a list of 3 priorities (at most) and I focus on getting the answers I need. Sometimes long discussions ensue when I need to talk about a change in treatment, or surgery. Sometimes it’s a shorter discussion and I just need to hear information from a medical expert. These discussions are set around listening, feeling like I’m being heard, identifying my priorities and preferences and identifying tangible next steps.

What would you say to yourself if you could go back to when you were freshly diagnosed?

You will find a way through it. You will need to find a ‘new you’ but that new person will be a better and more empathetic version of yourself. You will be able to do the things you want to do in life but it won’t necessarily follow a traditional path.

What advice would you give to someone else with your condition that has just been diagnosed?

Learn as much as possible about your health. Personally drive the changes you need see including the discussions with your health care team. You are in the driver’s seat when you’re ready to take on this role.

What life lessons did your diagnosis teach you?

It has taught me what’s truly important in life. I have been so sick at times, and was even admitted to Intensive Care after the birth of my son. All I could think about was family – my husband, my daughter, my newborn, my parents, my sisters, etc. At times, I have felt the pull of following traditional models of what success means. Being diagnosed with this disease has forced me to figure out what’s really important and what makes me happy.

What lifestyle changes have you had to adapt?

I have made a few lifestyle changes, one of the big ways is exercise. It can be difficult to find a way to make exercise work for me as I have pretty significant joint damage. I found Zumba class about 10 years ago and I fell in love. The music inspires me and before I had arthritis, I used to be a dancer. 

Are there any stigmas or misconceptions surrounding your illness?

As someone who was diagnosed in adolescence, I have consistently fought the stimga that arthritis is a disease of the old. What my body could do was not what society sees as ‘youthful’. I still fight it to this day, even in my 40’s.

Do you have an example of when your illness was invisible to someone else?

The fatigue! No one sees how dead tired this disease makes me. I have had to call in sick to work, backed out on plans with friends, and generally withdraw socially.

What keeps you moving forward?

Being involved in a community like CAPA keeps me moving forward. There are so many negative aspects of this disease but I have found community of like-minded people. It is one of the biggest gifts that arthritis has given me.

Have you had any surgeries or long periods in the hospital?

I have had 8 surgeries and many hospitalizations. I spent two weeks in the hospital when I was 15 years old, back when they still had rheumatology wards. These has disappeared completely with the introduction of biologics. I had limited treatment options when I diagnosed in the early 1990’s.

What kind of help have you reached out for?

When I was pregnant for my first child, I reached out to find resources and peer support to help me with pregnancy and parenting. I didn’t find much which is why I’ve launched a project with CAPA on pregnancy and parenting with arthritis. Here are some of the links to the project survey and educational resources:

Pregnancy and Parenting with Arthritis: A Resource for Patients by Patients

Pregnancy and Parenting with Arthritis: CAPA Project & Survey Results

Was there anything you had to give up because of your condition(s)?

The piano. I started playing piano when I was 9 years old and advanced quite quickly. I love music and when I play, it is a full physical and emotional experience. By the time I was in grade 8 in school, I was in grade 8 piano with the Royal Conservatory of Music. I was diagnosed with arthritis in grade 9 and knew with the disease in my hands that the clock was ticking fast. I completed my grade 10 piano a few years later. I miss it tremendously though and it will always be one of my biggest regrets in life.

What is the most annoying thing people say to you about your condition?

When people try to advise me on what to do to treat my condition, particularly with diet. I have been told to avoid root vegetables, eat more foods with turmeric, become vegetarian, avoid milk, and more. It is what a fellow patient advocate (Dawn Richards) calls #patientsplaining. 

Does your physical condition effect your mental health at all and how?

Definitely – I think managing my mental health is probably tougher than managing the physical aspects of the disease. I’m sure I was clinically depressed as a teenager and after I was first diagnosed. I fumbled through most of my adolescence because there are just so many losses – loss of the piano, loss of being a regular teenager, loss of physical function, loss of concentration. It is a lot for anyone to cope with.

How do you advocate your condition?

I’ve been active as a patient advocate for over 10 years. I’m currently one of the Vice-Presidents with CAPA, work extensively as a patient partner in research, and advocate for access to treatment and better care. Our experiences as patients is so important to health policy development and it’s a voice that is isn’t heard enough.

What do you want others to understand about your condition?

I want people to understand that living with arthritis has made me and others stronger. I truly believe that we are more adaptable, resilient, and motivated because we have managed to pursue our life goals and dreams in spite of our limitations. There are strengths of character even if the healthcare system as a whole just sees our health as a limiting factor in life. We are able, not disabled.