Lets talk, or not.

A lonely flower in a field

A lonely child does not yield

A lonely star in the night sky

A lonely man gives up to die

A lonely car on a lonely street

A lonely girl admits defeat

The loneliness affects us all

A gutless fight, and pitiless fall

A lonely time in our daily routine

Sets the tone; a deserted scene

A lonely cow, under a lonely tree

A lonely soldier, this is me

-Tess Conner

Before reading my blog, I want everyone to know that I never started this blog to get followers. If I get them, I feel honored that people want to take time out of their day to read about my mine, my pains, my heartaches, and my fight…. my fight for bringing awareness to a disease that doesn’t get enough exposure.

I pray that I reach others who are suffering from chronic illness. Those who want to die from their pain, those who feel lonely, those that have no one to talk to about the disease that has overtaken their body and at times their life, those that feel like their outcry is not heard nor respected.

This blog is an outreach and my way to promote self-advocacy. If no one gets anything from me trying to create a healthy lifestyle, one day at a time… then that’s fine too. Truly I need this blog for my own healing. Lupus warrants the need to talk about my pain, and my triumphs. The problem is people don’t want to hear about other people’s pain and daily struggles.

We need to understand that for the healthy reader there is only so much they can take before cringing when we open our mouths. Trust me… I get it. Please don’t think I fault you for it. But, I need to be here for those whose voices are unheard.

When you’re beginning your self-advocacy journey on social media, you want to reach out to others, you want to draw attention to the disease, and you want to let others know they’re not alone. So, on my social media I try to post uplifting or comical post, as well as draw attention to Lupus. And I say this not to be arrogant, but if people don’t want to learn about Lupus, and don’t want to hear about it (or my life) … then they can defriend me. I want you to know this, because I want you to know ahead of time that I won’t take offense to it. That goes for family, friends and acquaintances. I also want you to know that I’m not looking for sympathy, or cheerleading, or the like. But I appreciate those who care; thank you. 

I’ve learned through the decades that there is a fine line between advocacy and a big ole’ pity party. I’ve worked with people in my coaching who were pity-partying, and who were seeking attention. Pity party people (as I call them) live in the drama of their problem. They seek out people to feel sorry for them, until the people can no longer support or enable them. They often have addictive personalities and seek out alcohol or drugs to deal with their problems. When I was coaching I would send these people to a professional therapist because I was not professionally trained to handle them or help them.

There is a balance between friendship and enabling. 

Which leads me to friends. It’s wonderful to have one you can trust and who is a positive person in your life. When I think of  my best friend; Yogi, nothing but beautiful memories come to my mind. I love her so much; it’s unconditional. I’m a very spiritual person, and I’ve thought many times that the reason God steered my family from leaving my hometown (which I absolutely loved) was so that I could meet my best friend. We have gone years without talking to each other (husbands, parenting, etc…) but as soon as we arrange an outing, we are right back where we left off. There was never a time when we met where we weren’t there for each other just as we have always been.  

She has an analytical mind, where I’m an empath. I know that when/if we talk about Lupus that she’s going to ask me what seems like a zillion questions. “What did the Dr. say about this? What is your action plan, what kind of medications are you taking? Isn’t there something more they can do for your pain? Etc… My response is generally, “He said, she said, I don’t know”. We probably both drive each other nuts. But we’re used to it. I’m more like, “I just need to live in faith, take my meds, and depend on God to heal me.” Where she’s into looking for answers and remedies.

I can’t think of too many ways we’re not alike though. For instance, we both believe in positive thinking and overcoming. We never resort to pity parties, instead we lift each other up, and this is the kind of friend every person suffering from disease needs. I pray you have a friend like this to lean on in times of struggle AND joy.

I’ve become a self-advocate because I realize that not all people have friends like this… and we all need them. It’s not that people don’t care, it’s that people don’t understand what we’re going through, and people have busy lives. We can’t fault them for that.

I would ask anyone who is suffering from a disease that gets little attention… to think about journeying into self-advocacy. I was a strong advocate for domestic violence, and sexual assault. I was also an advocate for human slavery/trafficking  and I began advocating for the LGBTQ community before I got sick. For those of you who are healthy enough to advocate for your cause(s) but don’t know where to start with legislature, please comment below and I will inform you on the topic.

Self-advocacy is a tad different. Self-advocacy according to Inclusion International is people who speak up for themselves, speak up for others, they ask for support when they need it, they make sure they have a say in decisions that affect them, they ask questions, and they learn new skills.

This blog is part self-advocacy, part understanding Lupus, and partly ways in which I’m trying to heal, and overcome. It’s also about my life. I put this in a blog so that I’m not bombarding people on social media with what I’m going through. The people who are interested can read it, and the people who are not can continue scrolling.

So, we can talk about it, or not.

God bless each of you. Prayers for those suffering, and gentle hugs to all.

Su

 

 

 

 

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