Advocacy: helping and supporting others.
Everyday we advocate for ourselves and those we know, love, respect, and/or admire. Social media has become the forefront for advocacy. GoFundMe pages, Petitions, and shared posts about anything and everything viral go around on the internet constantly. We say, “Sure I can support you because you’re going through X, Y, Z and I’m not but I’m here for you.” We like, love, show we’re surprised or angered by posts.
We do things for others a lot of times over our own needs. We tend to put others ahead of ourselves. But, when it comes to ourselves and our health and happiness and/or needs, we tend to not speak up about it, say we are “fine,” or just simply smile and put on a face.
But why is it so hard to say simple say “no,” or back out of plans when it comes to our own wellness and our own advocacy?
Personally, I don’t like to disappoint. I don’t like to say no because part of me thinks I am going to miss out on something amazing, or I will be leaving said person/friend out to dry. I don’t like to say “No,” because I don’t want someone to think that if I say no I’m not interested and maybe therefore they won’t invite me to do things. Is this rational? Perhaps, perhaps not. Is this typical? Maybe, maybe not. But, this is how it is.
When all this started for myself and I know for many others, we took charge of what it was we were needing because something was wrong. We told the doctors, nurses, family, and friends that X is happening in hopes they got it, understood, tried to understand, and/or would help. We spoke up for ourselves. We advocated for us.
Me saying, “Something isn’t right. Here is what is going on,” was important simply because I needed help. My body was acting up in ways I had never experienced. It was telling me I hurt, couldn’t walk, couldn’t do this or that and by saying so, I was bringing awareness to what was happening.
Sadly, advocating for ourselves after a time or if there isn’t a lot of support can be daunting. People have been told speaking up about what is wrong with them is for attention. A lot of times we aren’t believed. A lot of times there isn’t the support that is needed to just get through it. How do you get through something that won’t ever go away when you have no one to be there for you to lean on?
I am lucky in that I do have supportive friends and family.
They may not relate to my experience as they don’t deal with it themselves but, because I openly talk about what I am going through, they can understand a little more.
Advocating for ourselves isn’t because we want the attention. Do people think that those of us who suffer, be it from anything, really want the attention that comes with it? The stares because you’re walking with a cane or using a wheelchair even though nothing “physically visible” is wrong with you? Do others understand how hard it is to say in your mind, “I can’t do that anymore; I can’t do that like I used to. What if I do it? Will I hurt more? Will I flare?” The answer is no.
Personally experiencing the lash of someone telling me that me using a handicap spot at the mall once was terrible and made me a terrible person because there was obviously nothing wrong with me really changed my view of myself and this illness. No you can’t visibly see what is wrong. But, having experienced such a negative experience to what is already a negative physical response, I asked in my support group what to do? What can I say? I stared dumb founded when a woman said those words to me. Someone spoke up and said they put a piece of paper in their dash that states they have an Invisible Illness and that if there are questions to just ask. This is advocacy for ourselves and for those with invisible illnesses.
Melissa Swanson, the Minnesota Advocate for US Pain and Co-Leader of Fibromyalgia and Associated Conditions Support Group, said:
“By speaking up [for yourself] you’re already an advocate.”
Those of us who were at the support group this last session were thanked for showing up, for supporting each other by showing up, and by checking in with each other. Illness, regardless of what it is, can cause people who suffer to withdrawal, be depressed, feel lonely and misunderstood. By checking in and even just making the commitment to ourselves and the others at the group to go showed that WE ARE ADVOCATES. We do care. It may be hard to get the motivation to go, but because we do or reach out to each other, we are a form of advocacy and support which is so important.
We all lean on people in our lives: parents, siblings, friends, and co-workers. Whoever we have that will listen, support us, and be there for us.
For those of us who do suffer from illnesses, support is sometimes the difference between staying in bed and going out into the world. Having someone advocate for you by showing up or reaching out is what everyone needs. Advocating for yourself gives us one way to control what we can’t. What and whom do you advocate for?