Thursday, November 3, 2016

What I Be

While I was at the 2016 Joint Decisions Empowerment Summit in Philadelphia a few weeks ago, I had the opportunity to participate in Steve Rosenfield's "What I Be" project. The project is a social experiment that encourages participants to put their biggest insecurity out in the open and expose a side of themselves that no one sees. Participants then make a statement: "I am not my _____."

As you may be able to glean from my image, my biggest insecurity is asking for help. But, when Steve asked me to explain why I don't ask for help, I have to admit was sort of at a loss for words. There are so many reasons that it is difficult for me to ask for help - and I found I couldn't possibly explain them all in the 15 minutes we had to take my photo. The simplest explanation we were able to come up with is that I don't want help - and so we settled on: I am not my pride. And there is absolutely some truth to that.

But, in reality, the reason I have trouble asking for help is a lot more complicated than simple pride.

I don't want help.

I hate that I so often need help.

I don't actually realize I need help until it's too late to ask.

It's uncomfortable to ask for help.

I feel guilty for needing help in the first place.

There isn't anyone to ask for help.

It takes more energy than I have to find someone I can ask for help.

I tried asking and nobody listened.  

I recently asked and it feels too soon to ask again.

People expect you to only need help in special circumstances, not all the time.
Everyone assumes I look fine so I don't need help. 

I think this list could probably go on and on. Because the reason I find it difficult to ask for help is a lot more than simple pride. It's also guilt. Exhaustion. Anxiety. Frustration. Habit. Self doubt. Fatigue. Resilience. Endurance. Strength. Lack of any other option. The simple reality of living life with an illness that never, ever goes away. Because the truth is that people living with chronic illnesses are some of the most likely to need help - but often the least likely to ask for it.

I don't really like this picture of myself. To my own eyes my face looks exhausted and drawn, but I guess that's sort of the point. I look like someone who could use a little help, and the words on my face make that clear. So I want to share this image to remind myself how important it is to try to ask for help when I need it - and I hope that by sharing I can remind others who are struggling that it's ok to ask for help too. 

(If you'd like to see the images from the other Joint Decisions participants, you can check them out here.)


Tikhonova Olga said...

Hello Mariah! Your post made me cry. I also have RA, I've had it since I was 13, so for 16 years already. Honestly, I don't remember what it feels like not having RA.
I can very much relate to what you said about asking for help. For me it's also difficult.
For me top 3 reasons I try and do something that I know I shouldn't be doing (eg lifting heavy grocery bags...), are the last 3 on your list. A) When it feels I'm asking too soon, b) that people expect I may need help on special occasions, not every day, and c) that I look healthy => I don't need any help. What you wrote is so true to me. Thank you for your blog, I find it very helpful and informative!

Unknown said...

I loved hearing a little more of the story behind the picture. Thanks for sharing.