When to pull the RA card


I rarely if ever use the fact that I have RA to get out of something and take issue when I hear about others doing it.  In fact, I hate it when people assume I need help with something unless I have very specifically asked.

For the record, I can: use a ladder, carry dishes, haul my groceries in, open doors etc.  But all of these are items that people have tried to force assistance on me many, many times.

I do understand but it’s also frustrating because I feel like most of us are acutely aware of our capabilities and limitations and dammit, don’t limit me if I don’t tell you I’m limited, right?

However, and I don’t know if it’s an RA thing or if it’s more of a ‘I’m not going to do this thing’ because to be fair, my plan for the following would be the same with no RA.

What plan?  Oh, just that tomorrow I found out the building I work in is having its yearly fire drill.  So at 9am, the alarms will sound and all floors must evacuate via the stairs.  Then we get to stand outside in the heat and get cleared back in floor by floor, also via the stairs.

I work on the 8th floor.

So I will be working from home until lunch tomorrow.  Because mama has RA and absolutely no time for that nonsense! 😂

7 responses »

  1. Of course strictly speaking it’s things like ‘Can Amanda cope with 8 flights of stairs if there really was a fire’ that these fire drills are for. Then again … if I were you I’d be doing EXACTLY the same!

    Couldn’t agree more regarding the frustrations of being needlessly helped, however well meaning, and NOT using RA as an excuse. Hubby has used it once or twice on my behalf and I’ve come close to homicide!

  2. Safety preparation shouldn’t be taken lightly either by yourself or your company. You should participate in these drills and provide feedback as to what your needs are for you to be comfortable in the event you should have to evacuate. Yes, I know it’s a pain to climb up and down 8 flights of stairs but what are going to do? Jump from a window? I doubt seriously they will let you leave if there is a fire so where are you going to sit? I was the business continuity advisor for my division pior to my RA diagnosis. All folks were identified that required assistance and what they needed to ensure safety and comfort. If you don’t practice you won’t know nor will your safety folks. If you don’t care about your safety, no one else will.

    • Hi Jules, I completely understand where you are coming from. I do take this seriously too, I know where the stairs are and where the meeting point is. I don’t require assistance walking down the stairs because my hands are most affected so I just didn’t see the need to take an hour to practice during a busy day when I already have the information I need in case of an evacuation. I do realize that I could’ve been clearer and stated that I wasn’t knocking safety in general.

  3. I am somewhat recently diagnosed after dealing with progressive symptoms for about nine months. I work on the eighth floor of an office tower as well. The last fire drill, I was on crutches and part of the “needs assistance crew” that rode the freight elevator. It is a real quandary and an example of the struggle when I consider what is best going forward. If I’m aware of an upcoming drill, I would likely work from home. But the real issue is what would I do in a live event. Would I wait for the freight elevator or hazard sliding down the stair railing as I have claimed I would. I’m sure underlying the decision and half-joking option is the fear and uncertainty that is a hallmark of this disease and something I detest (takes break for brief meditation to regain calm. When I am walking with my “hiking poles” (which, by the way, are awesome assists), I see the stares and weather the many comments without resorting to using the poles as weapons. I hate, hate, hate the idea of any sort of disability after living 46 years as a very energetic and athletic soul. And what I mean by hate is fear, so I don’t want anyone asking if I need help. When I’m having a bad day, though, I swallow my fear and pride and accept their offer. It’s tough, and I’m only getting started on this journey. Thanks so much for your blog and this venue. Best wishes to all!

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