My Story/Self-Advocacy

Self-advocacy is defined as the action of representing oneself or one’s views or interests.  Advocating for ones-self becomes imparitive when you are diagnosed with any type of Chronic Illness. It’s a dog eat dog world out there and sadly no one but you can ever truly stand up for what you believe in!! And to get the proper care and treatment for your condition. 

It’s just been in the last couple of years I have learned just how important this topic is.  I learned the hard way through years of drs appointments and tests and such that if I don’t stand up for me no one else will.  Here is my story. And my journey to advocacy/self-advocacy!! 

The last couple of years it seems like once winter hits I am sick ALL the time. Bronchitis every few weeks, sinus infections. All fun things. Since the end of December I’ve had Influenza, bronchitis twice, a sinus infection and now pneumonia. Damn low immune systems. I feel like if someone looks at me who is sick, I then get sick. I am so over it!! I just want a few weeks where I can breath, and not sick during the winter!!! Is that too much to ask? 

 Surprisingly, (or not really surprising As it takes forever to get diagnosed) I wasn’t diagnosed with my first autoimmune disease until I was 26. Looking back at my childhood and teenage years I was so sick all the time. I can remember my friends and boyfriend always asking me why I was sick ALL the time. My answer was always just “I guess I have a crappy immune system!” Little did I know it was really true. I can remember during my sophomore year being diagnosed with Mono and it lasted SIX months! Who has mono for SIX freaking months. Only me!! I also remember during that time having such bad pain in my arms and legs during that time. And was just told oh it’s probably just the Mono. Knowing what I know now that was my first real Lupus flare. Nothing was ever done to follow up on that and it was all forgotten. 
Also during my sophomore year in high school I also started having tremendous headaches that could last up to two weeks. Light sensitivity, sensitive to smells and noise. And again those were just brushed under the rug! Along with the constant belly pain I started having in 1999. They have checked my appendix so many times and it’s always fine. So I became best friends with Advil and the heating pad. At the time I was too young and lacked the knowledge to stand up for myself and really advocate for me. 
Fast forward many years and I landed myself in the hospital in Feb 2012 for a week. Once again another respiratory infection. But this one was different. It wouldn’t let go!!! I was in the ER two days in a row and they kept telling me it was just anxiety. But, the last day in the ER I said I wasn’t leaving until I saw a hospitalist and was admitted. And admitted I was!  They never could pinpoint a diagnosis, so I was discharged on high dose steroids for several months. As well, I was out of work for several months. And still no diagnosis. During this time somehow I was also diagnosed by interstitial cystitis. Which could have been some of the lower belly pain I was having. 

Finally, in June 2016 I had an ANA come back positive and was sent to a rheumatologist. Who finally diagnosed me with Lupus and Fibromyalgia!! It was scary but I was so very happy to finally have a diagnosis. It was at this point I learned about being a self advocate even more. The Rheumatolgist and I didn’t see eye to eye and I was forced to learn to stand up for me, in order to get the care and treatment I needed. If I didn’t advocate for myself I would have never gotten the treatment I needed. 

In November 2011 I was diagnosed with endometriosis by having surgery. This was the cause of my abdominal pain. Another time in my life I had to advocate for myself. The dr at the time didn’t want to do surgery and just wanted to continue on with birth control as treatment. But I was tired of living in pain and if having surgery could help I wanted it DONE!!!! The surgery did show my endometriosis and relieved my pain for about two years. I only got that surgery bc I advocated for myself!!
Fast forward again to Feb 2016, I had my first hemiplegic migraine and was hospitalized.  They thought it was a stroke and was treated as such. But they just continued to get worse and the symptoms intensified. All while my adrenal glands were slowly starting to fail, making everything worse. I was getting no answers at my local hospitals so I demanded a referral to Mayo Clinic. That appointment didn’t prove to be very helpful. And I was forced to quit my career to take time off. The last thing I ever wanted to do. But it was necessary. I listened to the drs and took six months to get better. And at this point I am better and trying to go back to work. 

Had I not stood up for myself over the years and demanded better treatment I may have never have gotten the treatment I got now. And now I spend time reminding others the importance of self-advocacy.  And providing them with information on how to do so.  

Here are Ten Tips to Self-Advocacy

  1. Believe in you. 
  2. Take time to research and learn your rights. 
  3. Make sure to bring up and discuss your questions and concerns. 
  4. Make sure that you are effective in your phone conversations. 
  5. Never hesitate to put your concerns into writing. 
  6. Get information about your conditions and decisions about your care in writing. 
  7. Use the chain of command when filing a complaint with your dr it the hospital. 
  8. Know your appeal rights and responsibilities!
  9. Follow up and say Thank You. 
  10. Never hesitate to ask for help. 

I hope that my story somehow inspires you. And you can learn a little bit about how to stand up for yourselves. 

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