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Wednesday, April 17, 2019

50 Shades of Advocating

What is an Advocate

Almost immediately I knew I wanted to look into advocating when I was diagnosed. So the big question was, what does that mean? The easy answer, it means I'm going to help others in need of support, provide education and make people aware of Ankylosing Spondylitis. This is in no way a small task, and for people that choose this path that are dealing with health issues, its a monumental task. One that should not be entered into lightly. You need to understand what you are accepting by taking on this role. You are saying, yes I will stay up to date on research and medical information. I will help others find accurate and accountable resources. I will help educate by using accountable and accurate resources when I see something inaccurate. I will make myself available to others in need. I will become a public figure.


So what happens to all your hard work when you are sick? As things in my life have continued to worsen, I have had lots of questions about my projects, my efforts as an advocate. What happens if I am to sick to lead my support group? Who will answer emails and messages if I'm just not capable? Will all my dreams and hard work go to waste? What about all the people I was helping get through another day? If I'm gone will anyone find enough value in Giving Spoons to keep it up? For me, I think the same arrangements should be made as for anything else in your life. You don't have a family without deciding who will become responsible for that family when you die, so you should be ensuring that the family created by your advocating has someone to care for and provide for them when you are gone. So I did just that. I have plans for who will take over my awareness projects. It is documented in my final plans what should happen. I have someone designated if I am too sick. My family will not suffer because I knew when I took this responsibility on that I had to do just that, be responsible on my good days and my bad.



Don't put the weight of the world on your shoulders

None of us can do this alone. We all need guidance, support, comfort, something at some point along the way. We will all probably have questions too. If you want to be an advocate, I think its important to know your limits, and not exceed them. It's also important to know you can ask for help. You don't have to take on the world alone. We are a community of caring people and we want to help, that's why we are advocates. Some days I think to myself, I just can't listen to another person insult me for my choices on treatment, or lifestyle. Other days I am thriving on the recognition something simple gained. For each defeated moment, there are at least two positive ones. It has been nothing but a blessing for me. I have had other people attempt to steal my work and offer it to others to use as they see fit. I have been praised endlessly for something so simple that was just what someone else needed in that moment.

I have had Lung disease, liver disease, and heart complications all limit my abilities. Becoming disabled, having to get through some financial struggles, having failed relationships with friends, family and significant other. I  Brought home by children dying father and cared for him on his death bed. I took on the responsibility of being his mothers power of attorney. I'm dealing with a troubled teenage daughter, and homeschooling her. I started the first support group in my state, and created social media accounts all geared towards advocating and awareness, I started this blog, and a project called Giving Spoons. I am a board member to another non-profit. I have 9 million irons in the fire, but I have help. Back up when needed, people I can turn to when it is becoming to much. I have a team of people I can depend on to help me ensure my health is number one, and that if I'm down, my family, my community doesn't suffer for that.

More than one way to advocate

For some people, advocating to the level I try isn't going to work, or just isn't what they want. That's okay too. Nothing says you have to advocate a certain way, or do a certain amount. You can find what works for you and your community. We are all a community, but once you start projects like support groups, you will see that you form a community inside a community. You become known to those people as something much more. You are the reason some people have a glimmer of light. You give them the strength to push forward. You might be the only person they have tried to seek support in. It is ultimately a responsibility to ensure that you are doing right by your community. That's why you should have arrangements in place for when you need self care.

If you can't balance the need, and the work for your own self care, maybe a leadership role isn't for you. Maybe giving support from the sidelines is the best role. The point is, there is no wrong way to be an advocate, nor is there a lack of need of any role. The most important thing, is to remember that If you take on the role of a leader, you are taking on responsibility for a community that looks to you for guidance and support. Be sure you understand the great toll this can take, and be aware of how much you have to give. Set your limits, make a team of people to help ensure you and your community are heard, and supported at all times. These are things that I have recently been thinking about a lot. Because I am a support group leader, and sometimes people are going to express their disappointment in you. We are not perfect, and we are sick, but so are they. We can't loose sight of that. It just so happened that I was confronted with such a hurtful situation.

Be the umbrella in the storm

As I was feeling worse and worse, my strength depleted, my body physically and mentally exhausted.  I knew even though it was time for my support group to meet, I wasn't in any shape to attend or lead in anyway. I had not yet created my team of back up help, or alternate methods to provide that group setting. It was that day that showed me just how important the role I had was. I wasn't just a person, I was a leader that others seeked out for understanding and hope. I contacted all my regular members and told them of the cancellation due to me being much sicker on that day. It was about twenty minutes after the scheduled meeting time when I got a phone call. Not a pleasant one either. This gentleman had never attended a meeting, we had never exchanged any type of communication. He was very angry that I wasn't there for the support group.

I apologized over and over, and explained what was going on with my health in that moment. He. did not care, he informed me I had a responsibility and that if I couldn't be responsible then I shouldn't be leading the group. I again, explained I'm diagnosed, and as a sufferer of AS you should understand the unpredictability, the way it can make you feel! His response, was yes, but you took on this role and we came a very long way to find out there was no meeting, and that's not acceptable! I offered to meet with them because I felt so bad that they had drove several hours, but how was I to know? I couldn't possibly know someone would come from so far and not reach out to me via email or phone first. I realized right then and there though, I did choose this, I started this, and I just left them hanging because I felt bad and had no back up plan. That definitely wasn't responsible on my part. So yes, our lives can be challenging, and things can make a turn for the worse, but every storm runs out of rain. Until it does, be the umbrella, offer some kind of protection because we all have storms.