Self Advocacy Shouldn’t Be So Hard
It doesn’t matter what it is that you’re going through, when you are fighting to keep your head above water, you get really exhausted. It’s inevitable.
To suffer and have your symptoms go unheard for so long eventually makes other people start to question you as well.
Typically, that’s what encourages self advocacy in the first place.
Unfortunately its also what makes the process so hard.
Its one thing to suffer and have support, but its a whole new world when you are suffering and have no support. It creates a whole new level of discomfort that i still haven’t found a way to deal with, especially now that i have cancer.
I’ve done my best to stay positive, despite the fact that others have questioned me and my journey to advocating for myself. But truthfully, its been really hard & really frustrating.
It also makes me wonder what those would do if they were in my shoes, suffering.
I cant help but think that they would do the same thing that i have been doing. Searching frivolously for answers.
For the last six years now i have started my day in severe pain so bad that my nerves freak out, my muscles in my back spasm, and i throw up and sometimes panic from the pain. Then, for the better part of my day i spend doing different things to try and feel better. It usually keeps me isolated in my room, going back and forth from the bathroom to my bed until i feel well enough to do other things.
Through the process of trying to figure out what exactly is wrong with me, almost every doctor i have seen has ridiculed me or talked to me like i am crazy. Almost every experience in the hospital has been belittling and demeaning. I’ve lost friends, family, jobs, my husbands job, so many things in my life have changed since i began advocating for myself.
To be honest, it shouldn’t be such a hard process.
I’ve learned that the journey of self advocacy and trying to find a diagnosis can be quite the lonely one.
When you don’t know how to help you, no one knows how to help you.
Now that i have thyroid cancer i have heard over and over that “this is the good cancer to have, so consider yourself lucky”. I get the sincerity in that statement, truly i do. But I’ve found that most statements like those are better left to themselves.
Because most of the time the people saying those things have absolutely no idea what its like to go through what you are going through.
Yes, even doctors.
Plus, those words seem so insensitive to me. Having cancer, an autoimmune disease, anxiety, a chronic illness, a mental illness, addiction isn’t fun. Suffering my friends, is not fun.
Trust me, if those of us that are suffering could make it go away, or find a way out of it, don’t you think we would?
Let me tell you, its 10 times harder when you have doctors who are refusing to correlate your symptoms with your diagnosis. Despite everything you find online to tell you otherwise, and despite anything you try and tell them. The doctors that “know best” really do make you start to question yourself and your sanity.
As irritating as it can be, that’s not what this should be about. What we really need is help and support.
So instead, i think its important to go over how you can help those in your life who are on a similar journey.
Start listening to understand us instead of listening to respond.
Sometimes we just need someone to listen and not for someone to tell us what they think we are doing wrong, or what they think we could be doing different. Those types of feelings trigger walls to go up, especially when we don’t feel that we are being supported.
When anyone is on a self advocacy journey, they need all the support that they can.
- Don’t assume you have it all figured out.
Thinking you have something all figured out when you have read about it, but have never actually lived through it yourself is really frustrating to us and pushes us away.
- Learn about our illness with us.
Be interested in figuring out what and why we are suffering so that you can help come up with other solutions to overcome the best that we can. Especially together and with our loved ones.
- Please do not get upset with us when we cant explain why we are feeling the way we are.
Sometimes its hard to explain how we are feeling when we don’t understand it ourselves. It takes time to process what is going on in your body and to tap into your intuition.
- Let us feel the feelings.
When you are advocating for yourself in any sort of fashion you discover and uncover emotions you didn’t know where there. It’s important for any one of us to feel the feelings, and to allow ourselves to sit with our emotions. As long as we don’t stay there too long. That’s when we need your encouragement to start looking ahead to whatever is next.
Stop questioning our symptoms.
Those of us who are interested in finding answers for ourselves are usually not the ones who are making up symptoms in their head. Trust us when we tell you or show you how we are feeling, we need your support and not your criticism.
- Listen to our needs, even though they may be silent.
The things that we stay most quiet about are sometimes the things that we are the most upset about. Constantly living in pain makes it hard to want to mention any other need. But those needs can be just as important.
- Support us in the decisions we make to better our selves.
The decisions we make for ourselves might not always be what others think we need, but what we really need is support in what we think is best.
- Invite us to enjoy life with you.
We want to feel as normal as we can.
- Let us know were needed.
We don’t want to be a source of problems. It’s easy to start thinking that we are a burden because of our unresolved symptoms. We need to feel needed.
Be there for us, even when we say we’re fine.
Sometimes its easier to just utter the words “i’m fine” rather than explain jumbled up feelings.
- Remind us why we need to love ourselves & why self advocacy is so important for us.
Sometimes we just need to hear it from someone close to us for it to start ringing true in our mind.
- Encourage us to keep moving forward and to stay faithful.
We need hope & we need as much positive in our life as we can get.
However that may be or look like, it’s important that your community supports you and the decisions you make to better yourself.
Self advocacy can be a long road of suffering before any answers are given. This means that we need those that are closest to us to be calm and to understand, and also to be loving and compassionate.
Please be kind to us & keep supporting us, we are doing our best. & to those of you fighting so hard for your health, i hope you know that you are stronger than you think!