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An Open Letter: What Does It Take To Be An Advocate?

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Reprinted from with the kind permission of Christina. To read the original article, click here. 

Doing advocacy work is not for the faint of heart. There is so much more to this than just putting my face on something that says, “Hey pay attention to Lyme disease!” There is a component you need to be a good advocate and that’s the ability to bare your heart. It’s the ability to listen to the problems & gut wrenching stories of people around the world & try not to let it break you down, but instead inspire you to work harder. It’s the hours upon hours spent trying to help others virtually by offering advice and suggestions, or locating them a Doctor. It’s the joy you feel when your advice is helpful, but it’s also the sorrow you feel when it wasn’t enough.
That’s the part which people forget. That’s the part which wears me down.

I am an empath by nature. It’s both a blessing and a curse. An empath takes on the emotions of people around them & soaks it all up. Other people’s sadness becomes my sadness, and I have a hard time separating the two. Sometimes I need to take time for myself to recharge because it becomes too much. Being both an empath & an advocate is a combination that can wear down my soul because there are very few happy stories that that come around.

I think the hardest part of this job is realizing I can’t help everyone. As much as I want to, I am just one individual who is fighting her own battle too. There is only so much of myself I can give, so I work to put out as much information as possible in hopes that it will be enough. I work to give my friendship to anyone who contacts me in hopes that they feel less alone. But what happens when it’s not enough? I knew that what I had to give couldn’t be enough to save everyone, and when that moment finally came I felt the heartbreak deeper than I could have imagined.

Someone reached out to me recently asking for help. She asked for more help than I could realistically give in my current situation. Her story pulled at my heart and I could feel the desperation in every word she wrote. So I did the next best thing and I offered other options & suggestions. I offered support, I offered to start a fundraiser, and I offered to make calls on her behalf to every LLMD possible to get her the care she requested. I racked my brain and sent her a wealth of information to arm her with what she needed to succeed. Anything I was physically able to do I did. Once our dialogue ended it seemed like it was on a positive note, and she had found many people who offered to give her the help I could not. I thought everything would be okay. So you can imagine my shock when I got word that very recently she took her own life. It came down the fact that she couldn’t get the help she needed for her soul, and inevitably it was the only option she felt she had. When I got this news it felt like someone took my heart and crushed it. I couldn’t believe the words my eyes were reading on the screen. Despite what many believe she had support; she had people across the country rallying for her and lending helping hands. But at the end of the day it wasn’t enough. The pain won the mental battle.

That is the reality of this disease. You can go online and see all kinds of fun Instagram posts of perfectly curated gluten free oatmeal photographed in a ambient light. “Look how fun clean eating can be!” says the caption of the organic Quinoa in red pepper sauce. You can get on twitter and see quotes filled with hope and people talking about the yoga they just did which was SO rejuvenating. “Look at me, I’m up at 8am doing yoga I’m so zen.” You can get on Facebook and see people putting only their best face forward when they talk about their lives and the amazing day they had. But that’s not real. THIS is real. The pain is real. The depression is real. The unrelenting loss of hope and non stop heartache that drives people to take their lives is real… because the thought of living with this disease is too much to bear. In the digital age we only put the things out there which paint us in a favorable light. We like to show off the pretty things & hide the reality. But that isn’t authentic. Being an advocate means showing what’s REAL, because people need to see it. It’s not always roses and rainbows hidden behind many layers of filters. I put my heart on my blog and I wear it on my sleeve because it’s the genuine truth, and I pride myself on that. I want people to see me and realize they aren’t alone, and someone else out there is hurting too who knows how they feel.

Being an advocate means not ever shying away from the cold hard facts. It means reaching out to those who are hurting and offering them a shoulder. It means admitting your downfalls and showing your weakness so that other people realize they aren’t alone. It means speaking out for those who feel like they don’t have a voice. It means being the unpopular opinion in a world that’s so focused on being popular and well liked. And most importantly being an advocate means being selfless. Because this is a full time job, one that never rests.
So you have to ask yourself, do you have what it takes?

Being an advocate has been the biggest blessing while also being the biggest source of heartache. I don’t think I could ever find the words to express my sadness, guilt and inadequacy that I feel right now. I know it will take time for me to realize I won’t be able to save everyone, try as I may. I wish for nothing more than the ability to have the resources to take every lost soul and connect them to a vessel of hope somewhere. But that isn’t realistic. The only thing I know I can do is be me, and keep trying day in and day out to be the best version of myself for those who seek guidance.

So for now I’m going to take a brief leave of absence to get my bearings and recharge. If I don’t reply to emails or tweets that’s why. Please know I love and care about all of you so much, and I know you fight this battle every day with the greatest courage. But sometimes an advocate has to rest & I now is the time I have to take care of myself.

God bless,

Christina is the founder of Lady of Lyme, a blog chronicling her journey to find health with Lyme Disease.  To read her blogs, see: 

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