This week is Invisible Illness Awareness week, and boy have I got one. This topic has been on my mind since I began this blog a few months ago, so the coming of this week is a perfect opportunity to bring it up (even if I'm a little late).
It's funny- for awhile, I didn't realize that my illness was invisible to others until I went to my neurologist for the first time back in January. After my initial visit with my rheumatologist, I was referred to a neurologist (among other doctors) to see about my increasing migraines. By the time I got an appointment (she's one of the top neurologists in the city), I was a pretty seasoned patient, and therefore, used to the usual routine-like manner that abounds when seeing specialists. You can imagine my surprise when I was called back to see her fairly quickly, and I was completely caught off guard by her amazing candor and bed-side manner. I felt like she had been waiting to see me all day, and that she had no other place to be or anything else on her mind. I immediately loved her for making me feel like a real human being.
She sat me down and went over my entire history, listening and asking questions in a very personable manner rather than a clinical one. Actually, it was more that she was listening to my story, rather than my medical history, and trust me, there is a vast difference.
After I was done talking to her, she gave me a neurological examination. She was immensely compassionate about the things I couldn't do (for instance, walking on the balls of my feet in a straight line. (The balls of my feet would have protested mightily in the form of sharp pain.) She had me sit on a bed as she tested my reflexes and strength. It was striking how much I couldn't do -when she asked me to hold my arms out straight in front of me, I was hardly able to lift them, and when she asked me to resist her as she pushed them down, they gave away completely. She finished the exam, and then said something to me that I'm sure plenty of people had thought, including myself, but had never before been verbalized:
'It's weird. You look perfectly healthy and fine, but it's clear from a closer look that you're struggling.' That comment so affected me because it was the absolute truth. I was struggling, but to most people, I looked fine. No one was going to look at me while I was on the subway during rush hour and offer up their seat. No one was going to look at me and think I would have trouble pushing a door open and do it for me. No one was going to look at me and see someone deeply in pain. Despite all that was going on inside my body, to other people, I looked like a perfectly healthy, fit young woman, and I was treated accordingly.
It was a double-edged sword, though. In many respects, I was not ready to admit that I needed help- that I needed that seat on the subway, or someone to open a goddamn door for me, and I was relieved that people couldn't automatically tell something was wrong with me just by looking at me. Though it was difficult, I needed to be able to go to work everyday and have a routine and not have people stare at me with that 'Oh god' pity look or feel uncomfortable, and so the guise of being healthy helped protect me in some ways.
On the other hand, when I was in need of assistance and not able to ask for it (my own issue, granted), the invisibility factor was awful. It is, in fact, and I never knew this before my diagnosis, profoundly difficult to truly ask for help, especially from strangers who have no reason to assume you need it. If you are very elderly, or have a cane or some kind of visual cue that you are unwell, most people will actually be gracious and help you (even in New York.) But if you look healthy, you are out of luck. Although there were times I was so exhausted and in pain that I thought I would genuinely fall over if I couldn't sit down on the subway, I was not brave enough to break the social taboo that runs thick in New York City and ask if someone would give up their seat for me. I just couldn't do it, because it was a layer of admittance I wasn't ready to peel away.
I haven't mastered this tricky aspect of having RA yet, partly because I started to feel so much better and needed less help after I started taking enbrel. Now, how I feel is pretty close, at least most of the time, to how I look to others. At my follow up visit my with neurologist today, she remarked, 'you are doing fabulously!' Ironically though, now that I am in less pain and less symptomatic, I feel that having RA has become a bigger part of my identity than when I was suffering from its effects constantly, which makes the invisible factor even more prominent. I mean, all things considered, I feel pretty good. I look like a healthy person, and yet, I'm not cured. I still have RA. I am still dealing with what this means for me and will mean for me. I still get crushingly tired and have flare ups of pain, but no one would ever know unless I speak up, and pain is a shitty secret to have.
One good thing this has done is make me realize more and more that people, even if they don't show it, have a hard time. I think about that so much in this city because I am constantly confronted by so many people in such public but private moments. People struggle in this city all over the place. I try to remind myself that, even when it isn't obvious, the people around me may be suffering greatly. This does not mean I have become a saint (see this post). I still get angry at people who block the door of the train or push me out of the way to get on one. But my own experience has made me more aware of what isn't always evident, and I guess that's something.
I'd love to know how other people feel about this aspect of living with RA, or other invisible illnesses, so I'm looking forward to reading other people's posts this week, and hope people will share their experiences or impressions here.