Relationships and the Unpredictability of RA

One of the most difficult parts of rheumatoid arthritis (RA) and chronic illness is the unpredictability. It is, in my humble opinion, the greatest obstacle to a so-called "normal life" that people like us face.

Yes, I know that "normal" isn’t really a thing (especially when it comes to my life), but it is a thing that other, non-chronically ill, non-RA-having people think exists. That makes it especially difficult to participate in healthy social relationships, even with the most accepting individual – something I am currently navigating, and ham-fistedly, I might add.

Making our new connections aware of our RA

There are all kinds of relationships — friendships, dating, "situationships," parasocial relationships, friends with benefits, throuples – well, you get the idea. These days, there are just a myriad of ways to interact with other human people in the world we live in. Unfortunately, every single one of those is affected by the unpredictability of chronic illness and RA.

Now, look — any time I start a new relationship, no matter what kind it is, I make the other person aware of what it’s going to be like when dealing with someone with RA and chronic illness. I come right out and say that, look, it may seem like not a big thing now, because I’m doing well... but when it gets bad, my RA is going to make things difficult, and it’s OK if you aren’t up for it.

People 'handle it' until they don't

Well, no matter what, without a single exception, everyone always says the same thing: "Don’t worry, I can handle it." That’s the point where I always say, "Listen, I appreciate what you’re saying, but please understand that everyone says that, and they do handle it – until they don’t."

Of course, I always get the same response again: "I’m not them. I’ll be fine," or something to that effect. Well, OK, then buckle up and let’s get this -ship started.

As you can imagine, it rarely works out. Longtime friendships I made in school when I was doing better and had less RA and chronic illness damage tend to remain untouched because of the years of history, but any new relationship usually dies on the vine.

A sudden flare-up

I recently went through it with a new dating relationship I found myself in. I had the whole, "Hey, it’s gonna be bad sometimes," convo, as I usually do, and I got the response I always do, and it was great... for a while.

Then, I somehow hurt my neck (probably because I was burning the candle at both ends trying to seem ‘normal,’ as we are wont to do), and I was suddenly in the throes of a flare-up.

It all came to a head when we had a movie night planned, and when I got there, my neck acted up and I spent the whole time basically trying to mitigate the pain and left early.

Feeling safe to say I'm not feeling well

The next day, we had a tense phone call where we were both upset. She was upset because I seemed to suddenly get bad when I got there, as if I just wanted an excuse to leave, and I was upset because I didn’t get how you could think that of someone who was clearly in pain. It was at this point that I was genuinely concerned I couldn’t give this person what she needed.

Well, the next day, clearer heads prevailed, and we had a serious conversation about what to expect. She asked for more time to figure out how to navigate things, and I said as long as I feel safe to say I’m not feeling well or can’t do something, then we can proceed. So, here we are, learning as we go.

The unpredictability of RA can raise suspicion

The thing is, I don’t blame her at all. If you think about it from an external viewpoint, it can certainly look like it’s arbitrary and simply an excuse. One day I’m fine and helping out a friend with a computer, and then the next day I can’t hang out because my neck is acting up so badly. Or we have plans in the evening and I have to cancel them because I'm too exhausted, yet I was running errands and shopping earlier in the day.

Of course these things can look suspicious to anyone who hasn’t dealt with the unpredictability of RA and chronic illness, but as I told her — that’s the ballgame.

When given the chance, people may surprise you

Unpredictability is the hallmark of RA and chronic illness in general, and it’s a bear to live with — not only for the people around us, but for us, too! We never know what it is we are going to wake up with, and that makes longterm planning pretty much impossible. We get up, assess how much pain we are in and how much energy we have, and then set up our day accordingly – with the caveat that things can change literally in a matter of minutes!

The mental stress of never knowing for sure can take a toll on us, so I can’t even imagine what it’s like for someone who has no experience with RA at all – it must be overwhelming. Then throw in the fact that we are usually in pain when dealing with that person, and bam! Perfect recipe for disaster.

I guess the point I’m making is that the unpredictability of RA and chronic illness is difficult to live with for us, so try to keep in mind what it is like for someone who you’ve just met. As a good friend told me recently, let it sit for a bit, and don’t cut and run at the first sign of trouble – they may surprise you. Talk soon.