Miss Understood: Judged and Defeated

By Arlene Grau, Columnist

I like to think of myself as the type of person who always gets back up no matter how hard I get knocked down. It may not always be as quick as I'd like, but I find my courage and strength through every circumstance. Recently, I got hit with a big blow and I haven't figured out how to get back on my feet and keep fighting.

I had my disability case heard by a judge in May. I knew it could go either way, but I  felt like my lawyer had prepared a really good case and I had a chance.

My lawyer started to present my case to the judge, but as soon as he stated my disabilities the judge took one look at me and asked me how I knew I had Lupus and rheumatoid arthritis. I told him I had countless lab tests done, physical exams, two skin biopsies (I showed him the scars), x-rays, MRI's, and CAT scans.

The judge then asked my lawyer for “proof” showing that I do in fact have these diseases, because letters from my doctors won't do. People have been known to pay doctors to write them, he said.

I was amazed at what was happening. I understand why the judge was saying that, because there is so much fraud going on in disability cases. But I think it would be very hard to fake everything I have. I even showed him the scar I have on my wrist from surgery needed to repair the damage caused by arthritis. My lawyer showed him the file backing up my story, but he still looked like he didn't believe a word I said.

My lawyer was able to provide lab results showing that I am in fact positively diagnosed with rheumatoid arthritis and Lupus. But when he tried to explain them, the judge’s response was, "I'm not a doctor, I can't read these and confirm that."

In the end, the ruling was that my case would continue on another day --- when a rheumatologist provided by the state can either come in or phone in to confirm or deny that I am diagnosed with what I have.

It only took the judge about 10 minutes to decide he didn't want to hear my case. He didn't believe that I was sick, even with the proof documented right in front of him.  One was a lab summary with a footnote from one of the doctors where I was hospitalized, explaining that I was there because I was having an arthritis and Lupus flare.

All he had to do was read it, but he refused.

To date, I've been without disability benefits for 26 months and it has been the most stressful two years of my life. Even with the insurance that I'm paying for, I'm responsible for 10% of the cost of my health care.  My medical expenses are ridiculously high because I need infusions, biweekly blood work, MRI's, etc. -- along with weekly visits to my rheumatologist and monthly visits to see my pain specialist.

Right now I feel so defeated. No matter what I wanted to do or say, I had to sit there quietly and let that man judge me and rule over me with all his ignorant power.

I've come so far when it comes to dealing with people who refuse to understand my diseases or learn about them. But then my trial brought me back to a place where I don't want to be. Being judged by others is never fun. When you're being accused of such a big lie and your character is poked at, you can't help but get hurt and take it personal.

Someone once told me that they might deny me because I can't be 29 and disabled. My response to them was does a five year old child ask to be given leukemia? Does a 23 year old ask to be given breast cancer? Of course not. But sometimes those are the cards we're dealt.

I was two weeks shy of my 23rd birthday when I was diagnosed with RA and fibromyalgia. I was still able to work hard for another 5 years, until they started to take a toll on my body.

Just because the name isn't cancer doesn't mean it isn't a serious disease.

I wish this judge would hear the story of my journey with RA, Lupus and fibromyalgia so he could get a better understanding of just how advanced they're getting. But instead all he sees is the person delivering the information: A young, seemingly healthy, able body.

Frauds have ruined the system for those of us who truly need and deserve it.

Arlene Grau lives in southern California. She suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.