Supporting A Self Advocacy Journey
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.
I suppose that’s what encourages self advocacy in the first place.
Unfortunately its also what makes the process so dang 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 it has been really hard and 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 to get answers regarding your health.
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. 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 get.
- Don’t assume you have it all figured out.
When other people assume they know what you’re feeling it isn’t just frustrating; It actually pushes us away from wanting to share anything else with you. It can honestly be hurtful as well. We just want to be heard and understood.
- Learn about our illness with us.
Be interested in figuring out what and why we are suffering. It helps to have your help coming up with other solutions to overcome the problem. It helps to be together and with our loved ones while on this journey.
- Don’t 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 when you’ve been give no answers. And it takes time to make sense of it all when we are really struggling with our mental wellness.
- Let us feel the feelings.
In the process of advocating for yourself, you will discover and uncover emotions you didn’t even know where there.
It’s important to feel the feelings and to allow ourselves to sit with the emotions that come. 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.
Most of the time our flight or flight response is so triggered already that irrational thoughts can be the first to take over. Remind yourself the truth. “What I am feeling is real, but is it true?”
Stop questioning symptoms.
Trust us when we tell you or show you how we are feeling, we need your support and not your criticism. Most of the time doctors have a hard time listening as it is and trusting what you are saying. It helps when we have support from others rather than making us feel like it’s “all in the head”.
We want answers just as bad as you do.
- Our needs may be silent, but we need you to listen.
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 without feeling like a burden. But those other needs such as emotional support are just as important.
- Support us our decisions but give us your advice
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. If there is something we are unsure of, its always best to discover all advice given. If we feel like our decision for a medical decision is final, we need you to trust that too.
- Invite us to enjoy life with you.
We want to feel as normal as we can, and living life is still just as important to us. It helps to have people around that are willing to pull us out of a pit. Sometimes all it takes is for someone else to make the plan and execute.
- Let us know we are 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 so that we don’t become more discouraged.
Even when we say we’re fine, we still need you.
Sometimes its easier to just utter the words “i’m fine” rather than explain jumbled up feelings. Understandably so, it gets frustrating after hearing the same response every time. Even when it doesn’t seem like it, we still really need you.
- 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 else for it to start ringing true in our mind. Most people are unaware of the struggles one deals with in their personal lives. It helps to have people in our lives who are willing to encourage us when we need it the most, and to remind us why we need to keep going.
- Encourage us to keep moving forward and to stay faithful.
We need hope. And we need as much positive in our life as we can get. We need you, we need. your encouragement, we need your love, and your light.
However it may be or look like, it’s important that our community supports us. Especially when you are making a decision 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 close to us to be patient. We need those who are willing to understand, be loving when its frustrated, and compassionate when we need it most.
To those fighting for your health, i hope you know that you are stronger than you think! You will get through this. Keep hanging on to hope!