A Beginners Guide to RA: Friends & Family

Patient Expert

I'm not going to lie to you: having a chronic disease like Rheumatoid Arthritis can be hard on relationships. Your friends and extended family -- partners and children will get their own Beginner's Guide -- have to go through the same emotional adjustment and learning curve as you do to understand your disease and the impact it has on your -- and their - life. You have one advantage: you know what it feels like. They don't. Some of your friends and family members will adapt remarkably well, making a smooth transition, understanding when to be supportive, yet retaining what your relationship is really about. Others flail about, their own issues popping up in various ways. Like these:

"I know just how you feel"
People will tell you they know how you feel -- after all, they have osteoarthritis in their pinky or sprained an ankle a couple of months ago. Partly to blame are the commercials that talk about "minor arthritis pain" and show happy couples flying kites on the beach (why is it always kites on the beach?). Statements like this come either from an urge to connect with you and create a common bond or someone's in a sulk, needing attention and ego strokes. Sometimes you have to grit your teeth, smile and give them their moment in the spotlight. At other times, there might be an opening for a gentle education about say, the differences between osteoarthritis and RA. If you're on a drug like Methotrexate or one of the Biologics, telling them that your disease requires a drug that suppresses your immune system instead of over-the-counter painkillers may get the message across.

"You can't possibly be sick!"
Amyaria, one of our community members, posted about the quintessential idiotic statement in this category: "You're as healthy as you want to be." Other insightful opinions may include "You're being lazy" and that you can't have RA because you're young or don't have an exotic symptom they heard must be part of the disease. People stuck in this mindset may need more information or they may be planted firmly in the denial phase of their own grieving process about your RA. If you have the energy, maybe you can work with them, but if you don't, there's nothing wrong with lovingly referring them to an online forum, such as ours, or to a counselor. But sometimes, the statements come from spectacularly healthy people, convinced that mind over matter can move mountains. Facing this kind of arrogance and willful ignorance can do a number on your head and make you wonder if you're just not trying hard enough. For your own protection, it might be easier for you not spend too much time with such a person.

"You win!"
It can be annoying listening to someone complain about the intense pain caused by a hangnail when you've barely managed to crawl out of bed, but it can be equally annoying to be told that your friend's pain doesn't count, because yours is so much worse. Sure, getting some perspective is always a good idea -- compared to a child starving to death in Darfur, I'm just fine -- but sometimes, you need to talk about your troubles and not feel guilt. If you're always the person in the most pain, it can lead to an unhealthy place where you're "The Sufferer" and there's no open sharing of feelings. Having taboo topics or assigned roles with you being the person to be pitied or babied and the other person being "The Caregiver" who is never allowed to be in pain, chips away at your relationship. There has to be room for both of you to share your feelings with the understanding that it's not a competition. Within the context of each of your lives, your feelings and theirs are equally valid.

"Gotta Go!"
Some of the people you know now may leave after your diagnosis. If your relationship with the person is activity based -- you run together or go clubbing on the weekends -- and you can no longer do that activity, making the transition to a relationship based in something else can be difficult. As well, many healthy people find it uncomfortable to hear about pain and illness, to the point where they figuratively stick their fingers in their ears, close their eyes and chant "la, la, la" until you stop talking. When they leave, it is because they need to get away from the discomfort and luckily for them, they can. This one hurts. A lot. I've found some comfort in the idea that people are in your life for "a reason, a season or a lifetime," but in the end, you can only grieve and move on.

The thing about learning curves is that in order to learn, you have to make mistakes. In the relationships with your friends and family, you are the expert on RA and it puts the onus of education on you during a time when you're already busy dealing with the situation yourself. You shouldn't accept hurtful statements and behavior, but if you can see that the person is making mistakes while loving you and willing to learn, take the time to talk and work it through. Although RA may pose challenges, it can also be a gift. It can deepen relationships, making them less about the surface and more about the real you. Being able to roll with the changes that are part of living with a chronic illness can teach you and the people in your life to roll with other changes, to grow together and create lasting relationships.