“Remember, if you ever need a helping hand, it’s at the end of your arm, as you get older, remember you have another hand: The first is to help yourself; the second is to help others.” – Audrey Hepburn
There are several quotes by Audrey Hepburn that inspire me. The quote above is one that describes why I try to do my best to help others with The Chronically Awesome Community.
There was a time after I found out that I was ill that I was exclusively focused on myself. I was terrified. I was in so much pain, and I wanted to know what was going on. I knew, however that some of those answers had the potential to be frightening. Some of the answers could be things that had no cure. This painted a picture of more pain in my future.
I became focused on my symptoms, and my quest for an accurate diagnosis. I worried about every ache and pain to the point of distraction and obsession. What did they all mean? And most of all, what if anything could anyone do to make me feel just a little bit better?
I had a plethora of odd symptoms. Random hives, swollen glands like softballs, skin so hot to the touch it could be felt by those standing next to me. If there was one symptom that was driving me mad, it was the pain. Couldn’t someone do something about the pain?
Audrey mentioned that we have two hands. I spent much of my time looking only at one hand, the hand that helped me. The hand that focused on my problems.
As I was looking at that hand, I was looking for more information for myself. As I gathered that information, I began blogging about my frustrations. I was tweeting links to the information I found that I had wished my doctors understood. Before I knew it, this blog that I considered my online bitchfest diary was getting a lot of traffic.
Out of what I thought was nowhere, my twitter follower count started growing.
I grew confused. What was so interesting about what I was bitching about? I know that every now and again I would say something funny, but that could not have been enough. Then I talked to someone who blogged and wrote professionally. Someone who gave motivational talks and helped people find career paths and and create life goals. He said that what I was, quite simply was “real”. Ok, I could deal with that because I didn’t have to change. Little did I know, change was in my future. (you can find the blog about this conversation soon, I have to get old blogs posted.)
To my friends, my family and my coworkers I was getting annoying. Conversely, to the online community, I gave them access to the information when they wanted it, in more concise diaries. This was real information.
I researched the links I shared beyond WebMD basics. My blog described the frustrations of someone going through the same jungle that so many chronically ill patients had gone through, or were going through. I had the added struggle of also trying to be a full time employee, a wife and a mother.
I didn’t want to be sick. I didn’t want to spend my time researching illness. I am sure there were things I would have rather done, but I was forgetting what those things were. I became singularly focused. I was becoming the reluctant activist and I didn’t even know it.
People started telling me that I inspired them. (WHAT?) Some started asking me questions that I realized I now knew the answers to. I was asked things that I didn’t have a chance in hell of knowing about a year before that.
We were becoming a “group” of many people that talked every night on twitter. We talked about all kinds of things; it wasn’t always about our illness. We talked about hobbies, or our family activities, or issues with work. We laughed online at each other (including our symptoms) and we met more and more chronically ill people, and our group grew.
Just as this was growing larger I noticed that in many ways I was feeling better. As I felt better emotionally I was able to do more physically. The more I laughed the more energy I had.
It wasn’t uncommon for me to spend a couple of hours in a private chat with someone. It was time spent helping them to understand their diagnosis or working with them on ways to distract themselves from pain. After the chat I would feel a huge sense of catharsis.
Just as this wave of goodness was cresting, I lost my job.
What a huge blow. It left me discombobulated. Losing a fifteen-year career in large part to this absurd disease that I still could not get a tangible grip on.
I had been getting my second wind, I had gathered every inch of my precious energy and not taken a sick day in four months.
It all came crashing down.
I am not sure what it did. I don’t remember how it felt. I remember sitting on the couch and watching every episode of Doctor Who, Torchwood, Firefly and Dollhouse all in a row. Just staring for a few weeks.
I pulled myself into my shell. I hid from the realities of what had happened.
Then I realized, truth told, a part of me was glad. It was time for me to move on. My heart was no longer in it. My heart was now with “my people”.
I had started as reluctant, but I was no longer reluctant. I had accepted that I was ill and I was ready to move forward in a more positive way when it came to my health. I was seeking out specialists, even if they were not covered by my insurance. I was driving 60 miles just to see doctors. What started to matter was that the doctor understood conditions like mine. I chose specialties in things like Fibromyalgia, Lupus, Autoimmune Disorders.
When I saw a new doctor, or talked to them on the phone, the first thing I said was, “I have Bipolar Disorder. Will you be considering my mental illness when evaluating my pain and other physical symptoms? I already take antidepressants that claim to help with chronic pain, I am in therapy, and I am still in pain.” I have walked out the door on two doctors when they began to blame my pain on my Bipolar Disorder. I don’t mean that I never scheduled another appointment; I mean grabbed my belongings and walked out the door mid-appointment.
And finally, in a beautiful moment of epiphany. While seeing a rheumatologist whose specialty is scleroderma, I was diagnosed with Ehlers-Danlos Syndrome. He diagnosed me when he walked into the examining room and looked at me. This brought me back to comments an anesthesiologist said to me prior to lithotripsy. He commented about my peculiar frame (my arm and neck length and some other things. My husband and I didn’t have time to do much about it, I was about to be knocked unconscious. I mentioned it to my mother and then we all moved on.
EDS is something I was born with, and had lived with for over forty years. The enormity of my shock is hard to describe, yet I continue to be pleased. Pleased to finally understand what was going on with my crazy body. Every time I dislocate or sublux some joint I hate it, and it hurts. But, I know what it is. My doctors all know what it is. My pain doctor works very hard to do the best he and his PA can do to keep me comfortable.
At the time of my diagnosis, I met someone that saw something in me, and something in this grassroots movement I had been creating. I took the name from what my friend also named Jewles called us one night. She coined “Chronically Awesome” during an interesting conversation we had one fateful evening. This “random family” of chronically ill friends became organized around a simple concept. We know that illness neither defines nor takes away what makes us whole, worthy people in this world. We may have lost some things when we became ill, but we have found other gifts and we use them now in many ways. We are not lost to illness, it only slows us down when it must, and it never ever defines us.
Now for the good work. I started support groups and a podcast. I started a blogging group, and using the #chronicallyawesome hashtag everywhere I could.
My new friend Brian, a nonprofit professional made a big suggestion. I had much to consider. Could this really become a nonprofit? Would people want to join this organization, and reach out with their other hand to help fellow chronically ill people as I had? Would they join me to share that feeling you get when you help others?
I was thinking of Audrey. I wondered if others would understand what she said in the way that I, and the others that had already agreed to help me did. Would others want to help the chronically ill, of any kind to make it down that jungle path of chronic illness. Would they embrace the concept with them until they come out the other side as Chronically Awesome?
I found out the answer. It was and still is a resounding “Yes”.
The most important lesson I learn each day is that as soon as I reach with my helping hand I find more gifts and skills I never knew I had before. Quite quickly I find that this is not a solitary effort as more people become willing to take my hand that needs help. I am no longer alone. I do not feel alienated for my conditions. When you are a part of a community of like-minded people the results are awesome.