The Girl in the Bubble

   

48 hours after our last weekend together, The Boy came down with the plague.

Okay, so maybe it wasn't bubonic, but it certainly was a particularly pestilential case of the flu. The Boy rarely gets sick – he’s one of those annoying people with an iron constitution – and when he does get sick, it's usually short-lived and mild. This one wasn't. This one absolutely flattened him.

How I managed to avoid catching this is beyond me. He and I get pretty friendly when we're together and yet somehow, he's the one who sank into a soup of misery and germs while I motored on with my life. I'm sure you can imagine the frantic knocking on wood that's going on as I'm writing this. My neighbours might start suspecting an infestation of woodpeckers.

By the time The Boy comes back into my general vicinity this Friday, it'll have been close to three weeks since we've seen each other. Because I have a suppressed immune system and that means staying far, far away from sick people, no matter how much I love them or how much I may need to see them, either for personal or professional reasons.

It can take a while to train others to understand what a suppressed immune system means. Most people don't seem to quite get it and maybe that's because most people don't understand what RA is. Even before I was on a medication that suppressed my immune system, I would get harder hit by illness than most other people. Now? I had the flu in June and it's taken me about five months to get reasonably close to my normal state of health.

These brilliant medications that help protect our joints and organs from damage come with a price and it isn't just side effects. It's isolation, a form of reverse quarantine, if you will. Most of the time, reasonable precautions, a bit of extra attention to cleanliness and a truck load of hand sanitizer for use after handshakes and touching public surfaces will  keep you protected from catching whatever's going around. But every now and again, it's time to head into the bubble.

People don't get it. Since I wasn't hanging out with The Boy this past weekend, I made a lunch date with a friend I've known for years. We’d make the arrangements by e-mail so I wasn't prepared for her sounding just as pestilential as The Boy. Both of them coughing with every other sentence and so stuffed up they sounded as if they were at the height of the flu, despite both having lived with it for two and three weeks respectively. I begged off, claiming suppressed immune system and not being willing to take the risk. My friend, who you'll remember has known me for years, told me that she "wasn't offended" and that she "hadn't thought about it."

And that's it in a nutshell. Because people do get offended when you cancel yet again because they're sick. It's just the sniffles, after all. Or they've had it for a week, so they shouldn't be contagious anymore. What for them may be a minor case of the sniffles could cost those of us who live with RA and take immunosuppressants three weeks or more,  potentially hospitalize us. If gets awkward when you have to yet again explain to someone why you have to leave or (to an attendant) why they have to wear a mask while they are assisting you with your care or be extra diligent about handwashing after touching raw fish (yes, seriously. A healthcare worker who doesn't understand). Time and again, I've been in a situation where I have to weigh trying to explain to someone why I'm backing up as if they have just turned into a Typhoid Mary versus risking catching their germs. It's taken me a long time, but I've finally stopped being polite and now my need to stay healthy is more important than their need to not be offended.

And people do get surprised, because they don't think about it, often despite repeated education about the reason you have to be cautious to the point of paranoia. To a point, I don't expect them to - they don't live with this, I do - but there is also another point when you start wondering if maybe they don't believe you. I am obviously disabled and it's therefore easier for me to persuade people that I'm sickly and fragile, but for someone who's RA is largely invisible, there is a real barrier to understanding. Because they look fine, don't think? So they can't possibly be sick or in pain or have a delicate constitution.

I've been thinking about how to help build that bridge between our reality and yours and I'm a little stuck at the moment. Could be because of holidays are taking up most of the room in my head, but so far, the best idea I've had is walk around ringing a bell and chanting "unclean, unclean." Not at all related to the truth, but guaranteed to have an impact.

Do you have a better solution?