Published on Thursday, 23 August 2012 12:04
Written by Jules
Leading a community isn't all sunshine and ice cream – it’s hard. Write a post that delves into 3 challenges that you face as a Health Activist.
I always call myself a "Reluctant Activist". The reason for that is simple. Had I not become ill, I most certainly would be doing something else. What? I don't know, probably something I have far less passion for, but different nonetheless. I have so much unexpected passion for this role, as health activist, and it has brought me so much joy, that the challenges really don't feel like challenges. They are opportunities. I know that sounds like one of those inspirational posters with a snow capped mountain, or something like that, but it is true in this case. The challenges put before me as a health activist, in a leadership role for a growing community have been excellent opportunities to prove to myself that I have skills and passion for things I never thought I had in me.
In the very briefest history of the Chronically Awesome Community, it is important to point out that no one ever planned for this "thing" to happen. It all started one night during a twitter conversation. We were trying to arranage a cruise for a group of friends that are all chronically ill. For reasons that are too complex to get into, we were having difficulty naming our little project. After toying with several different names, one of which was obvious but forbidden, my friend and interestingly enough named Julianna, came up with Chronically Awesome. This is why I prefer being called the "Godmother" of the movement.
Here is the first challenge of leading a community. The cruise never happened. I tried very hard to first come up with a date, then a destination, and also a listing of various cabin choices to meet several price points. I put together an online poll, and I had several interested parties. Fliers went out, and deposit due dates came and went. Nothing ever happened. No one ever called or emailed. The dates all came and went. No cruise.
Organizing a large group, or smaller segements of a large group can often be like herding cats. It's not easy. No matter your communication skills, getting everyone available on the same date, especially for something that costs money, and involves even the smallest amount of group consensus is just difficult. It's no one's fault, it's just part of group dynamics. I have learned from this that a certain amount of heavy handedness has to be used. Firm decision making must be employed early on. And, while some of this was done with the cruise (limited choices given based on what I knew would be a good value, departure port choosen so that no one would have to fly too far etc), the fewer the choices, or even no choices often result in better response from your group. For example, with an event: just decide when and where, give price options and firm payment dates, and let the results unfold. I learned this as a marketing executive that planned conventions large and small. Why I thought I should treat this differently, I am not sure. People are people. When you want people to respond it is best to give them few decisions to have to make. This is not a judgement on intelligence, it is a statement about how we all respond to being presented with big decisions and many options.
Managing my time is the next big challenge I have faced, and still face every day. When Chronically Awesome grew beyond the name of a potential convention to a hash tag that many chronically ill people began to identify with, and I was the person pushing the concept of finding the positive things in our chronic life that made us more awesome than ill, I was taking on a lot of personal support conversations.It was easy at the beginning. I knew everyone that was using the tag, and the excitment of watching the numbers of people using the tag fed my energy to keep up personally supporting anyone that had a problem and needed a friend to talk to.
I would chat with people on twitter, and when things got more complex, we would move the chat to DM, and then sometimes, on to texting on the phone. I didni't move to telephone calls or video chats at this point, as I had a dreadful fear of the telephone. This meant, that on top of caring for my own illness issues, blogging, working, and running my own household, I was texting, tweeting, or DM'ing with individuals with issues they needed to discuss upwards of 3 hours a day. Oh, and the community kept growing.
The photo at the beginning of this blog is of me reading an email from a waitress at a local restaraunt. She spent about 30 minutes talking to me at the end of the evening. Her mother is chronically ill and has given up and accepted that she is going to die. We talked about how to face her mother's choice and many other topics. I left her my card. She emailed me several days later and told me I changed her life. I read the email with tears in my eyes. I can't tell you how many times I have have talked to strangers in stores for 20 minutes or 2 hours. Actually, I mostly listen. I always give them my card. This young lady was the first to write and thank me. This is just what I do. And as I do, the community keeps growing.
Now, I search the tag ChronicallyAwesome and I no longer know even half of the people using it. I am shocked to the point of giggling at how it has grown. I am still blogging, and doing two podcasts, running my site with a blogging community, and I have a Facebook support group and several Facebook pages to manage. I run a social media consulting firm, I do public speaking gigs. I think there are other things I do as well, and guess what? I still spend a good 3 hours or more a day talking to individuals by phone, text, DM, or Google Hangout about their problems.
As my other activities have increased, I have not given up any of that support time I spend with people, in fact I would argue that I have increased it. Time management is a big issue for me as a health activist. And the crazy thing is that it is impacting my health. Recently I spent a couple of days totally unable to walk.
Finally, the last challenge is keeping it real. Keeping myself informed about all of the issues that face my community, by keeping one step ahead on the articles, the research, the happenings in the Chronic Illness world. That's tough when you work in a community that supports anyone with any chronic condition. You have a chronic illness from a-z, you are chronically awesome, come on in. And doing this all and still keeping grounded, down to earth, and never ever thinking that you are any better than the people you lead and support. Sure, I work hard. Yes, I have done some cool things. But, I do them willingly, and I do them to feel good about what I do, not to be thanked or to be applauded. As soon as I start trying to be more than I am, as soon as I try to achieve fame, or some sort of accolade for doing this, that's when I need to stop, that's when I am not doing it for the right reasons and have not kept it real. We are people with real conditions and real daily problems. We don't need holier than thou rock stars, we need leaders that will engage with us daily, and remind us that they are us, they feel just as crappy as we do. And trust me, I feel pretty crappy. But, being Chronically Awesome, the crappy isn't my focus, the fact that I finished this blog before noon is what has me pretty jazzed.