Miss Understood: Proving Disability

Miss Understood: Proving Disability

When you break your arm, everyone can see it because of the cast you’re wearing. When you scrape your knee or cut yourself, the wound is visible. It’s easy to see a person’s pain or what they went through when their scars are on the outside.

However, not everyone who has suffered or is suffering from a chronic illness has the scars to prove what they’re going through.

bigstock-Filling-Up-Legal-Court-Forms-8174890Last week I had to meet with a doctor from California’s state disability program to verify my disability claim and the severity of my diseases. The doctor I saw was rude, insensitive and convinced that I was fabricating everything. During the physical examination of my joints and trigger points, he was so rough with me that I begged him to stop.

He asked how I was sure that I suffered from my conditions and if I ever had testing done to back up my claim. I told him my previous doctor at UCLA ran extensive tests and biopsies, but he simply rolled his eyes to everything I had to say. Then I told him my current doctor from USC also confirmed my diagnosis and performed the same routine blood work and biopsies.

Even with this information he continued to be condescending. He was sure I was lying.

I left his office in tears from the physical pain he caused me and enraged by the way he treated me. I couldn’t believe that this person was going to sway the decision on my disability claim. I knew he didn’t believe anything I told him. He even questioned my list of medications, but I had remembered to take them with me so I was able to prove that to him. It didn’t seem to matter.

I understand that this is the procedure and there’s a reason for it all, but I felt like the doctor had his mind made up the minute I walked through the door.

I’ve also had to get x-rays done to prove the damage to my joints. And next week the disability program is making me see a psychologist.  I’m interested to see how that goes and if they will make it seem like it’s all in my head.

It’s such a sad thing because I never thought it would be this difficult to receive disability benefits. It’s been 5 months since I filed my claim and I’m still waiting for their response.

Time and time again I’ve come across strangers who ask why I limp or use a cane and when I tell them I suffer from auto immune diseases they have the audacity to laugh in my face. They have absolutely no filter and expect me to allow them to put me on trial in order to prove myself.

During my working days one of my supervisors insisted that I bring in a doctor’s note for every day I was out ill, even though it was not mandatory. I obliged because she was convinced that there was nothing wrong with me.

At a different work site I worked with another “non-believer”.  Anytime I called out due to hospitalization she would find out where I was staying and call my hospital room at all hours of the day to verify that I was truly there. At first I thought she did it because she cared, but during one of my absences she took my job away from me and then I realized it was all part of her plan.

I never realized that the moment I was diagnosed I would have to prove my symptoms, pain, and suffering to others.

However, I recently learned something new as well. I have the right to decide whether or not I want to be placed on trial.  There will always be people who don’t believe or require more proof, but unless I feel like they’re genuinely asking out of concern, then I have no need to go into details.

When people start proving their intelligence to me, I’ll start proving my pain level to them.

Arlene Grau

Arlene Grau

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

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

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Jacqueline Schaller

I have been fighting for disability for 4 years. My last appeal took over a year to get a response. I have had fibromyalgia for 16 years and have been diagnosed also with spinal stenosis, severe osteoarthritis and 4 necks spurs in the last few years.

Susan Williams

I’m so sorry. I’m in the middle of this too. I’m 59 and have struggled with this for so long. It is sad when you want to just smack someone for saying “but you LOOK fine”. I’ve lost my career, my previously pretty nice income, lost my home and I have PTSD from a vicious “charismatic, sadistic psychopath” I was married to. No one believed me about him either, until he murdered an innocent policeman while robbing a bank on the other side of the continent from my daughters and myself. So, why would I have to kidnap my daughter? Even with legal custody of her? Why wouldn’t anyone listen before someone was murdered? The same reason they won’t listen now. I almost wonder if it is because I was pretty, rational, and worked so hard. I tried many different jobs having given up on doing educational graphics for naval aviators for 25 years. Now I have nothing left. Yes my ex-husband the CPA is in prison for 800 years, but he took my son with him. But hey, “I don’t LOOK sick.”

I went through this, too, for 2 years. We realized the business plan of an insurer is ‘collect premiums, deny claims.


I feel your pain. I have Fibromyalgia and have had it since long before I was even diagnosed. I believe it started at around age 18, when I lost a massive amount of weight(went from near 300 lbs down to 110), followed by being diagnosed with depression/anxiety/ Anorexia/Bulimia. I believe that was my trigger. I overcame the anorexia/bulimia and took and still take medication for anxiety & depression which works relatively well. But after that my body always hurt, I was in constant pain. I would go to the doctors and they ran blood tests, did x-rays, and exams and couldn’t find anything wrong with me. I was somewhat familiar with Fibromyalgia since my mother had it. I asked my doctor if that’s what it could be and she did some sort of pressure point test and said that I did show signs of it. However she would not diagnose me because she said I was too young. She also seemed like she really didn’t believe me. So I guess you could say, I gave up for years, and tried to slap on a happy face and act like I was okay, even though I was in a lot of pain.You learn to put up a happy façade after so long of having to suffer quietly in pain, it’s your only option. But it’s also very taxing. I just didn’t want to hear It was all in my head or hear the contempt in their voice inferring that I was full it. Finally I had to say something again though because it was no longer just about me. I was now a mother, and the pain was limiting the quality of time I had with my child. Finally 9 years after the pain started I was diagnosed in 2008 with Fibromyalgia. The thing is, even with a diagnosis there is still a lot of skepticism from people. I can just hear it in their voice and tell by their attitude. It’s very hard for me to deal with at times, because not only do I have to be in constant pain, I have that to weigh heavy on my heart. I wish they had an x-ray or blood test that would show them I have it. That would make it so much easier. But unfortunately they don’t.

Julie Anna Bloodworth

My heart goes out to you. I too have had to go through the disability dance. I hate to tell you, but you are just beginning the “proving dance”. I have Chronic Pain due to Failed Back Surgery Syndrome, Neuropathy, Fibro, and RA. I had several Physicians, Surgeons, and Neurosurgeons (actually all that resided within a 150 mile radius of my home) state in writing that I was disabled.
I didn’t think that receiving the Disability that I had paid into since I was 15 years old would be so difficult to obtain. I wasn’t sent to another physician (I had seen about all there were) but I was scheduled an appointment with a Psychiatrist to see if “it was all in my head”. One of the questions on the questionnaire I filled out was had I considered suicide, which by this time I had – I was almost scared to answer that I had, thinking they might put me on a 72 hour hold, but the Psychiatrist just ignored this fact and sent me on my way.
All in all, I was turned down twice for disability, filed appeals for each and finally had to get a lawyer for the “Final Judgement Appeal” where I had to go in front of a Judge to convince them that I was truly disabled. Luckily the Judge saw the truth and granted me the disability that I deserved. It only took 2 years – that’s right 2 years – and a stack of paperwork that when stacked together was over 2 1/2 feet tall.
During this time I financially compromised my husband’s savings and had become a shut-in both emotionally and physically. I truly believe that Disability tries to wear you down and not everyone has the resources to continue seeing doctors and buying medications that were necessary. If I hadn’t had my husbands total support and help – I would have committed suicide because I was given no other options.
If this had been a private insurance company that refused to pay I could have gone to the Insurance Commissioner, but since this disability was through the government I didn’t have that safety net.
Don’t give up! Trudge on, fill out the stupid forms – often the same questions asked a hundred different ways, and keep fighting.

Don’t give up, unless the stress is really devastating to you,,the disability does this to almost everyone. Almost everyone is refused the first time..for almost every disease…the psychiatrist appt is to see if you are so depressed that the doctor will say you are mentally disabled. Some people had to be diagnosised with a mental disability as well as Fibro my algia to get approved. It a horrible process as well as you are going thru the pain and all of the other symptoms of Fibromyalgia..Try to stay strong and know that your not the only one who is going thru this..Hugs and prayers to you..

Rekha Naiidu

Hello, we have the same problems in malaysia I have progressive relapsing Mutiple sclerosis , I was on rebif for 1 year,injections three times a week, not cheap RM3300 a month which did not work for me, I was admitted in hospital three times and referred to various doctors including psycharitrist for depression.

Kathy Leggett

I am dealing with the same thing only I have been fighting for my disability since april 2011