When our doctors talk about starting another drug for our rheumatoid arthritis (RA), one of the first things many of us do is research the side effects. Looking at that list can be unnerving, but ultimately when we take the meds, we may have to live with manageable side effects. We may discuss ways of minimizing the side effects with our doctors, but otherwise we find ways of moving on.
But no one ever talks about the emotional aspect of having these side effects. We asked our Facebook community to share their thoughts about the emotional impact of side effects. Some of these stories will appear throughout this post.
Coping with new symptoms
Although it can be scary, we take medications with our hearts full of hope that they will minimize the symptoms of RA that have made our lives miserable. Maybe even bring us into remission. Miraculously, they often do.
And then other symptoms appear. Instead of being back to feeling healthy, we now feel better, but this feeling is overlaid with a film of other symptoms. When we talk to our doctors, they shrug it off as “side effects” and focus on the fact that our chronic illness is now better controlled. Apparently, we’re supposed to just suck it up.
It wasn’t supposed to be like this. The meds were supposed to make us better, not feel crappy in other ways.
The pros and cons of medication
Side effects vary. Some spend a couple of days after taking their medication curled up on the couch battling nausea, headaches, and fatigue. Others develop an astounding amount of gas and struggle with the social stigma against farting. And then there’s increased risk of infection, acid reflux, weight gain, and so many more.
It’s a new and sometimes scary, sometimes embarrassing, reality. The meds may make your RA better, but what about all those other symptoms that take the place of the pain and fatigue of active disease? Is this a way to live?
It can be so tempting to close your eyes to the realities of RA and try going without medication. For most, though, the consequences of no medication means progressive disease, and damage to joints and other systems in the body.
It can be hard to wrap your head around those outcomes because they are not happening now, but they could happen in the future. However, something else is happening now — you can wake up able to move. And after a couple of days of side effects, you have the energy to work, to play with your kids, to ride a bike. To laugh with the people you love.
And that’s why we find a way to live with and around side effects. Because of what the medications enable us to do, and what the medications protect us from. We adopt the saying “no pain, no gain” to life with RA, grit our teeth through the side effects, and focus on the good.
When not to tolerate side effects
But there is a line. There are side effects that are annoying and uncomfortable, but temporary or manageable. And then there are those that affect your life as much as uncontrolled disease. Those are the ones that send us back to our doctors asking to change the meds, or refuse to take a particular medication ever again.
It can be difficult to find the line that means Stop. When you have RA, you get so used to feeling vaguely — or even significantly — unwell, whether from the disease itself or the side effects from medication. It’s easy to slide into a place where you just plow through life while feeling awful.
But it’s also important to remember that you don’t have to feel like that. That if your days are taken over by pain, nausea, migraines, or other symptoms, it is a signal to speak to your doctor.
There is so much to worry about when you have RA. Will the medication control the disease, will you get the scary side effects, can you keep working, will your blood tests show something else is wrong, can you raise your kids, and can you deal with the anxiety of it all? And that’s just for starters.
Finding a way to adapt to living with side effects — the manageable ones, of course — can take one thing off your worry list. Talk to your doctor to identify the line beyond which you should seek help. Talk to others in the community about how to deal with the side effects.
And then remember why you take the medications and do just that: go out and live your life.
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Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.