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I should be dead.

In fact, I was slowing dying for nearly 7 months before I had lifesaving surgery to eradicate a massive staph infection in my abdomen. The irony is that the infection was directly related to the journey I have been taking over the past three years that began with a severe congenital disorder: bilateral hip dysplasia with bi-lateral hip impingement. In other words, no part of either of my hips formed correctly. As a result at 38 years old, I could barely walk and while the journey still continues, I have been deemed partially disabled because I will never get full mobility in either of my hips ever again even after multiple surgeries.

So how did this happen? Like so many others, I was afraid to advocate for myself - especially when I was in my teens.

The pain began when I was 15 and worsened throughout my 20's and when I approached doctors about my hip pain they said it was in my head and I needed a psychologist, not an orthopedic doctor. Unfortunately, I did not question their judgement and over time, despite the increased pain, actually began believing that maybe, just maybe, it was in my head.

Well, it wasn't. 

Fast forward nearly 25 years and dragging myself into a new doctor's office, finally began self-advocating and after x-rays and a lieu of specialists I began to learn how to push back on doctor's recommendations, force them to take the time to make sure I understood them, and made sure that I was involved in all plans relating to my health. In fact, I also did my own research to be sure I understood my diagnoses and surgical procedures and when I knew there will still problems, identified what my ongoing medical issues were, discussed them with my doctors and then actively participated in the plans that were developed.

The hardest part of becoming a self-advocate was getting over the idea that doctors know everything and that they shouldn't be questioned by anyone -  especially a patient with no medical degree. But when I did, the level of my healthcare began changing for the good. A big lesson: everyone should question their doctors. 

I also learned that when I needed help, I reached out to friends in the medical field and insurance industry and advocacy organizations such as ASK Resource Center for assistance with my advocacy efforts. 

As I continue to add more specialists to my list of doctor's, from my first appointment, I let them know that I will never stop self-advocating. I know my body and I know when something isn't right and when I know it, they're going to know it. 

I let them know that I will ask questions and debate strategies. I tell them that I will respect them and I trust they will respect me and together, we can become a team. There is a breaking-in process with each new doctor, but it gets easier each time. And believe me, as my story unfolds you will know that self-advocacy can change the course of your life in amazing ways. 

Now, back to my last surgery. I was sick. I knew I was sick but no one was listening. Yet I continued to call my doctors everyday and reached out to my primary care physician who also advocated on my behalf. And when they still wouldn't listen I took myself to the emergency room and after a rocky introduction to the ER doctor, by the time I was released nine hours later diagnosed with a life-threatening condition, the ER doctor had joined my advocacy team. 

So because of my persistence and self advocacy efforts, I am alive today. Granted, the surgeons who performed the surgery saved my life, but I saved my life by becoming more vocal rather than less vocal, when the doctor's weren't taking my issues seriously.

And this is why I have become so passionate about advocacy - both as a self-advocate and in networking with others who were also able to help advocate for me. 

I found ASK and FIND when I most needed it and I plan on sharing my story over the next few weeks and hope that some of my experiences and tips can help others. And please engage with my posts. Together, as the FIND advocate network grows, it will become a great way for families and youth to discuss their successes and ask for help. 

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Comment by Matt Bockert on June 28, 2014 at 2:05am

You're absolutely right about trusting your own instincts and advocating for yourself, even when it goes against what doctors might be saying. I recently discovered that on a much, much smaller scale. I went to the doctor with an extremely sore throat. I didn't have a fever or any other symptoms, but I never seem to have many other symptoms when I've had strep throat before. After my temperature ruled out any fever, the doctor asked me one question -- Did I still have my tonsils? (It was odd he couldn't tell for himself when looking at my throat.) I said no. He said people without tonsils had less than a 0.5% chance of getting strep. He told me it was just allergies and sent me on my way. I was up most of the night in pain. I couldn't eat anything, and could barely swallow water. I went to a different clinic the next day. The doctor there seemed shocked at the "treatment" I received the day before. She ordered a strep test, and it came back positive. I started antibiotics and felt better pretty quickly after that.

If I would have just believed the first doctor, the pain would have gotten worse and lasted a lot longer. I almost convinced myself that maybe it was just really bad allergies, but I knew that couldn't be it. We know our own bodies better than anyone else, and we often have to stand up for ourselves and trust our own instincts to get solutions.

Comment by Lisa Woiwood on June 16, 2014 at 4:21pm

Congratulations, Joanna!  Good for you for not being intimidated and continuing to educate yourself and to respectfully push your medical team.  You are an overcomer and have learned the hard way about advocacy. It is with sadness that I read your story, that you lived with pain for so long.  I wonder if perhaps this wasn't addressed earlier if you would have better mobility. Your story is very applicable to the world of education as well.  My daughter has Down syndrome, and I was well acquainted with the role of being "just a parent" as I was told by a school administrator. I, too, had to learn to be an advocate for my daughter.  Just because I am not trained as an educator, I know my daughter best.  Just as you are not a physician, you know your body and how you feel.  We are empowered by education, knowledge and being effective communicators!

Comment by Pam Meeker on June 13, 2014 at 10:56am

Joanna, thank you so much for sharing your story!  It's a great reminder to all!  I, too, have learned with a recent diagnosis that self advocacy is going to be a vitally important part of my healing process.  Yes...it's uncomfortable at first because it is intimidating to question those with a medical degree!  But, I have quickly learned that we also have much to teach them! :)  

Comment by Karen Thompson on June 13, 2014 at 10:08am

Wow, Joanna.  Thanks for sharing.  I'm looking forward to hearing more of your story on FIND.  This is EXACTLY what it is for.  To help folks connect and help each other help themselves.  

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