By Jeannette –
My trip to Headache On The Hill 2018 brought about a surprising learning experience that ushered in a bit of necessary reflection, regarding my hesitation to ask for and accept help.
I did not realize until after I received my acceptance to attend Headache On The Hill the extensive amount of walking that would be required. By extensive, I mean a starting time of 8:00 am, with meetings from 9:00am – 4:00pm, rushing between different buildings on Capitol Hill, and walking or standing on hard floors of marble and concrete.
For a person with Ehlers Danlos Syndrome (EDS) and the systemic co-occurring conditions that come with it that affect my spine, hips, and legs, my body simply would not tolerate this amount of walking.
Shortly after, there was an offer by the U.S. Pain Foundation to supply mobility aids or assistive devices to those in need. This was a daunting prospect for me. In my daily life, I am typically able to keep my routine well managed, so I am not in the position to require mobility aids and I ask for assistance as little as possible. I rarely have to say my least favorite words: “I can’t” or “I need help.”
This is where I had a difficult personal choice to make. I could have declined my invitation to attend HOH and miss out on finally participating in this advocacy event that was so important to me. I just needed to move this next obstacle, yet I couldn’t seem to move it alone.
I decided to accept the mobility aid and attend Headache On The Hill anyway. Because of this acceptance, I was able to do something wonderful, rewarding, and meaningful to me. However, would I be able to remove the obstacles in my head—my fear of asking for help and my fear of judgement?
The U.S. Pain Foundation was the organization that sponsored me. They are excellent at asking what they can do to help their ambassadors be successful. They are very aware of potential pain and physical limitations that could impact members of their organization.
I have gotten much better at circumventing these obstacles by planning and strategizing in my daily life. When I step outside of my normal comfort zone, though, I struggle because I don’t want to accept assistance or be seen as asking for help. I want to be independent and be able to do everything on my own.
Yet, I always urge others who live with chronic pain or limitations to accept mobility aids or any type of help they may need. I tell them that with assistance, you can actually do more and pay far less of a cost with your physical and mental health. I tell them it is not a resignation, but rather it is accepting a problem and finding a solution. So why can’t I tell myself the same things?
This event really opened my eyes to this battle I fight within myself. I eventually accepted it and realized just how much of a help the mobility aid was to me throughout the strenuous days; I couldn’t have gotten through those days without it and I am glad I did accept what I thought was going to be so frightening. It turned out to be one of the best choices I ever made.
There are many others like me who don’t want to bear or are anxious of the emotional pain and stigma that people with invisible illness often receive when they use assistance or mobility aids. It is an ongoing problem. However, I tell these people that it is brave, that in spite of this they can do what they need to do to survive and beyond that, thrive. And now, I tell myself that, too.