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Rheumatoid arthritis (RA) is a serious illness that can have a life-changing impact on your life. But with advances in medication, remission is now possible and it should be the goal of RA treatment, yet 60% of Canadians with RA haven’t had a conversation about RA remission with their rheumatologist. The road to better conversations with your doctors and hopefully remission may seem daunting, filled with scary-sounding medication, intimidating medical facts, financial obstacles, and the occasional troll under a bridge (no, not really on the troll). But it doesn’t have to be. There are some excellent tools to help you feel empowered to take the lead in your RA treatment so you can get back to living your life. Because that’s the point of it all: to protect your life and how you want to live it. Today, I’m sharing four steps that can help you on the quest for RA remission.

My story

So much of my RA journey was hodgepodge, without a plan and a goal – until 20 years ago, we didn’t have medications that could enable you to work towards remission. That’s why I became a wheelchair user by age 16 and spent most of my 20s and 30s trying to get a degree and a job, despite being flattened by flares it one week in four because my body couldn’t keep up. And then came what I call the Big Flare. It consumed almost every ability I had, made me so sick and caused so much pain that I had a plan to kill myself because it seemed like the only way out. Thankfully, it wasn’t — I started taking a biologic medication and it worked! The universe (or more accurately, science) waved a magic wand and I was given a second chance.

Being in remission is wonderful — sixteen years in, it’s still glorious every single day. But the damage is still there, I have more severe disability than before, more pain, side effects, and have to balance activity with rest. It’s worth it because I am still here, still loving my family and friends, pursuing my dreams and intoxicated from the beauty of the world.

You can get there, too.

Download the Talk Over RA discussion guide to help you have better appointments with your rheumatologist.

One: Know what’s possible

In order to push for remission, you first need to know that it’s possible and almost half of Canadians who have RA don’t. That needs to change. One in three Canadians living with RA don’t understand that this condition is irreversible and chronic. It’s essential to know the facts about RA and how it can affect your life. If you don’t, you’re not going to ask your doctor what can be done to protect your body and your future.

Here’s the good news: the development of more effective medication, such as methotrexate and the biologic drugs, means remission as possible. So much so that RA is increasingly becoming an invisible illness. For someone like me, who’s had RA for 50+ years, seeing this shift from certain disability to an invisible chronic illness seems like a miracle. Granted, we still have further to go to make sure there are drugs that work for everyone with RA, but given the progress in the last 20 years, I believe it will happen.

Two: know the obstacles

There are two general obstacles to remission: access to treatment and access to medication. Access to treatment includes things like finding a rheumatologist (and one who’s a good fit with you), your own levels of knowledge and comfort with being assertive in a medical setting, and your ability to meet with your doctor in person or virtually. Removing medication obstacles means wrapping your head around the necessity of taking meds — ask your doctor as many questions as you need — and accessing funding. RA meds can be expensive, but each Canadian province has programs for people with high medication costs (in Ontario, that’s the Trillium Drug Program). Talk to your doctor and pharmacist if you have financial barriers.

Truth be told, clearing these obstacles can take energy and a lot of perseverance. In both cases you’re banging your head against a bureaucratic wall and being successful may take time and effort and some advice from others like you. Keep pushing and don’t give up. Remember your goal: changing your life for the better.

Check out these tips for navigating virtual care.

Three: Take the lead in your treatment

In the past, doctors were treated as gods and your job as a patient was to follow their orders. Even now, many people become very passive in a doctor’s office and that doesn’t work when you have a chronic illness. You are the person who knows how RA affects you and that’s why you should be the lead of your medical team.

And that can be hard. When inflammation and pain getting in the way of everything you want to do and messing with your self-esteem and body image to boot, taking charge sounds exhausting. But ultimately, this is about your body, your goals, and your life and you should be in control. Having effective and meaningful conversations with your rheumatologist will improve your relationship with them and help you at work as a team. The Talk Over RA discussion guide is an excellent tool that you can use with every appointment (and with other doctors, as well). I use it myself and it has been a great help.

Four: Know where you are and where you want to be

Having RA is exhausting. It can blur the connection to your goals and your dreams, leaving you on autopilot, but that’s in the room for RA to get ahead of you. Taking a cue from the business world, I have learned to apply a “growth mindset” to my health. If a company sets a goal of 5% annual growth, they don’t sit back and wait for it to happen. They work at it, setting smaller quarterly goals and building in frequent checks on projects and progress, adjusting as necessary. Treating your RA the same way can get results.

Make sure your rheumatologist knows what goal you’re working towards.  Spending some time before appointments to think about where you want to be is a first step — try to be more specific than just “better.” Do you want to run a 5K, write a book, start a family, get a degree, play with your grandchildren, or clean the house without collapsing on the couch for days afterwards? Schedule times to do a check in with your body — create monthly and quarterly meetings with yourself and your calendar to check progress. If you are having a really tough time, you may want to track your symptoms for a while, either in a notebook or a symptom tracker app (pick one that can print out a copy for your doctor). Make some notes about where you are on your goals, such as. having improved enough to run 1K or maybe hurting so much that you can’t pick up your baby. Write it all down in your discussion guide or a notebook and make sure you keep your notes, app reports and previous copies of the guide. It can help you see whether your goal is getting sidetracked or hopefully be (fingers crossed) be proof of how far you’ve come

Living with RA is like any other major life change: it’s important that you know as much about what’s going on as possible so you can find a way to live with and around it. Often, that means rethinking how you approach almost everything in your life, including work, family, activities, and how you approach your medical care. Taking the time to get to know RA and how it affects you, as well as being aware of  what you want out of life — as well as what you want out of your time with your rheumatologist — is an essential step in creating a good life, RA and all.

This post was made possible by a Talk Over RA partnership. All opinions are my own.