I don’t know how to ask for help. Not in generic terms, but when it comes to my RA it’s something I really struggle with.
Last Friday’s Methotrexate dose was the worst yet. By Saturday night the nausea and pain was so severe that I was in tears. I couldn’t eat anything of substance all weekend, and come Monday morning I was weak, depleted and exhausted. But, running low on PTO and working for my tyrant of a boss, I forced myself up and out of bed on shaky legs. Getting ready, making a smoothie, a short walk to the bus, the bus ride and climbing the stairs at the T station left me completely wiped out. When I boarded the train there were no available seats. I wanted to cry.
I kept looking around hoping that a stranger would lock eyes with me, and, recognizing my pain and fatigue, graciously offer me their seat. A romantic notion at best. Eyeing the people sitting in the car’s priority seating, I rehearsed the words in my head “Hi. I’m sorry to bother you, but do you need this seat? I have Arthritis and I am having difficulty standing today”. It sounds so simple, doesn’t it? But I couldn’t force myself to say the words out loud.
Like many people with chronic illnesses, I spend a lot of time convincing people that I’m “sick”. The hardest thing is making people understand that my pain levels, and consequently my ability levels, vary WILDLY from day-to-day. And, since I usually stay home in bed on the bad days, almost no one outside of my family has a line of sight into just how bad those days actually are. In my personal life, this is hardest when I have to cancel plans with friends – usually last minute. I operate like this: GO GO GO all week and then crash and burn on the weekends. What this usually results in is me waking up on a Saturday morning exhausted and in pain and canceling lunch plans for later that day. My friends are very understanding, but I always feel guilty.
Work is a slightly more complex issue. My position is high stress, high intensity and highly visible within the organization, and, up until recently, I have been able to perform at that level. This has often been at the expense of my health, but when things blew up in April it really forced me to step back and reevaluate. Because it took me so long to speak up for myself, it’s been almost impossible to make people understand (1) the severity of my RA and (2) how quickly things have changed. Since then it’s been a battle even for simple things like leaving early for an appointment. I recently went so far as to complete the medical certification for intermittent FMLA.
The point is that even for the people that see me every day and know me well, it’s still difficult to make them understand the complexity of my illness, or, just how “sick” I really am. So when faced with the task of trying to do this with a stranger in one succinct sentence (and an audience of fifty onlookers) I just can’t do it no matter how desperately I need that seat. It’s really hard to be that vulnerable in such a public setting. It’s hard to ask for help. It’s hard to know that other people will judge me. It’s hard to meet the eyes of the people staring at me. It’s hard to try to prepare for someone refusing me the seat. But perhaps that hardest thing of all is admitting to myself that I need that seat enough to ask for it.