When our daughter Michelle became suddenly ill, we were in a state of total confusion. She was a vibrant woman of 34 years of age, a marathon runner and living in Arizona at the time where she had developed, established and managed a non-profit community organization. The family had gathered in Orlando to cheer her participation in the Disney marathon, but when she arrived in Orlando the first thing she said to me was “I don’t know what is wrong with me, but I don’t feel right and I won’t be able to run the marathon”. She sat on the back seat of the car in a fetal position and in excruciating pain. We were all baffled.

To learn more about Michelle's story and her transformation visit My Journey

We immediately contacted a local neurologist who performed an MRI informing us that he could find nothing abnormal. We were lost and confused. Michelle decided to fly back to Arizona and contact her general practitioner and we saw her leave not knowing what the future would hold for her.

It wasn’t long before she asked us to fly to Arizona to help with her care and most of all to help her deal with the medical community which had not been able to help her and who practically dismissed her condition as some kind of psychological disorder. We were angry and desperate as we flew to her. We spent weeks with her taking her from one doctor to another, doing intense research on the Internet and trying to figure out where to go next. I began to document all her symptoms, asking questions, watching her face and body language, tracking any new development and documenting all her medical data. I ended up with a long list of troubling symptoms that no one seemed to know what to do with.

To learn more about all of the alternative techniques Michelle has tried throughout her illness visit Alternative Medicine

It was obvious to us that she was not capable of working any longer, she barely could stand for more than a few minutes and the pain in her nerves and muscles was almost intolerable. Unable to find answers in Arizona, we finally contacted our old family doctor in Baltimore, Maryland and asked him to please treat Michelle. Even though he no longer accepted new patients, he agreed to see her. Dr. Dana Frank, a respected and well known physician associated with Johns Hopkins diagnosed her with Chronic Neurally Mediated Hypotension.

Chronic Neurally mediated hypotension is also known by the following names: orthostatic intolerance, the fainting reflex, neurocardiogenic syncope, vasodepressor syncope, the vaso-vagal reflex, postural tachycardia syndrome and autonomic dysfunction. It occurs when there is an abnormal reflex interaction between the heart and the brain, both of which usually are structurally normal. In individuals with neurally mediated hypotension, there is a "miscommunication" between the heart and the brain. Just when the heart needs to beat faster, (to pump blood to the brain and prevent fainting), the brain sends out the message that the heart rate should be slowed down, and that the blood vessels in the arms and legs should dilate.

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And she obviously had a very serious case of Neurally Mediated Hypotension along with other medical conditions including a large cyst on her spine which had to be operated on. Her pain and discomfort continued to escalate as time passed and she was put under very strong and dangerous medications that helped her to barely stand the pain. There were many months when she barely could lift her head from the pillow and later on she could only get around in a wheel chair. But, little by little, with determination, meditation, faith and a lot of inner strength, Michelle has started on the road to health again.

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Given her condition, we figured it would be fairly easy to go through the social security disability application process and obtain Medical Disability for Michelle. But, unfortunately, Neurally Mediated Hypotension is something that is not tangible enough like cancer or diabetes to be observed and readily recognized. And to be eligible for disability, a doctor must state that you're disabled "by medically acceptable clinical and laboratory findings". So we began our search for knowledge about the Social Security and Disability Insurance and 6 months from the onset of her illness we presented our case.

We first spent countless hours trying to figure out how to present her case to ensure that it would be recognized as a legitimate disability. In the end we decided to present it as honestly and simply as possible. We included letters from physicians and family, a list of her symptoms from the onset of her illness, a medical description of her illness, all the medical data that I had documented which at this point was over 2 inches high, documentation on all her lab tests and a cover letter explaining her situation.

There were many, many phone calls and letters with Social Security and we found that overall their employees were cooperative and willing to help give us direction as to how to proceed when we couldn’t figure out what to do next. We felt that the person at the other end of the phone line was a human being willing to do her or his best to ensure that we presented our case to the best of our abilities.

And, yes, Michelle was eventually approved for Social Security Disability!

I recognize that a person who is disabled will not be capable of keeping track of their illness, therefore, it is important to enlist the help of family and friends with the process. Based on our experience, here are some of the things we recommend you do if you need to apply for Social Security Disability:

1. Research, research, research:

Find out all you can about your illness based on your symptoms and diagnosis. Include the most important information with your social security disability application, especially the description of the illness, the symptoms and what doctors are saying. This will allow the social security employee to better understand your case. You don’t want to include reams of information, just enough for them to know what you are talking about.

2. Describe your experience and background:

Include a personal letter with your social security disability application describing your experience along with a copy of your resume so they can see your background, the type of work you were doing and the fact that you were a productive individual, gainfully employed before the onset of your illness.

3. Enlist the help of your physician:

Include a letter with your social security disability application from the physician who diagnosed your illness. This is very important because he/she knows best how to present your illness and also validates your condition. It would be helpful if you send him a draft of the letter so he/she knows what you are looking for and what will be helpful to your claim. Our doctor was very cooperative and appreciated the fact that he had a guideline for writing the letter.

4. Complete your own release of medical information for each of your doctors and obtain a copy of all your medical records:

This will save time in processing your social security disability application and help expedite your claim.

5. Document, document, document:

Keep records of everything, from dates of appointments with your doctor(s), to their name and phone numbers as well as copies of all your lab tests. Include comments about what was discussed at the time of your appointment and what your doctor recommended. Prepare a complete list of all doctors with name, addresses and phone numbers as well as the dates of the appointments and the results of each visit. You will be including a summary of this with your social security disability application.

6. Medications:

Keep a complete list of all medications prescribed by your doctor(s). Include dosage, date you started taking the medication, your reaction to it if any and any changes recommended by your doctor(s). As above you will be sending this with your social security disability application.

7. Contact social security:

As soon as possible call social security and enlist their help through the entire claim process. Gain their trust! Don’t be intimidated, ask questions. And call them for information and help as often as you need.

8. Contact information:

Keep track of the phone numbers and names of every person you contact at social security. Write the date you called and what was discussed. Keep paper and pencil by the phone to record any calls pertaining to your claim.

9. Present your claim:

Prepare an honest, neat, clear and readable package and submit your social security disability application along with all the required forms. Include the following in your claim package:

- personal letter with date of the onset of the illness, including details of how the illness started as well as copy of your resume. They need to see you as a person and be able to create a before and after picture of who you are in their head.

- letter from your doctor(s)

- letter from relatives describing how the illness affected you and the family and friends around you including what changes the family had to make to meet your needs

- list of all symptoms

- list with names, addresses and phone numbers of all your doctors

- list of medications, dates you started taking them and dosage as well as your reactions if any or benefit received form each of the medications

- A copy of all your medical records. This is the time to take all of the medical records you have been keeping, organize them and mail them in with your completed application. This will expedite your application process.

10. Copies:

Keep a copy of every single document you sent to social security along with your completed social security disability application form,

11. If possible do all your meeting with Social Security over the phone:

Here is the truth of the matter. When you are dealing with a chronic illness it varies from day to day. And there are days that you look great and there are days you look like hell. Your Social Security Worker may not understand that and to eliminate the possibility of an incorrect assumption it is better to coordinate all of your meetings by phone.

12. Do not get discouraged:

If your initial social security disability application is rejected, find out why and file for reconsideration. Don’t hesitate to contact social security during the entire process if you have any questions. Remember, they are there to help you.

Social Security provides 4 levels of decision:

1. Initial determination

2. Reconsideration

3. An ALJ Hearing

4. Review by the appeals council

You can apply for your own benefits. You do not need a lawyer to initiate your claim. Don't expect it to be easy, but at the same time it does not require a rocket scientist! This is something achievable especially if you follow the above guidelines. The forms may appear complicated at first, but once you become familiar with them they will make sense to you. And remember, you can always call a social security employee to help you fill them out.

Remember, you may be denied even though your claim is legitimate and you may be denied again at the appeals stage, but that does not mean that your social security disability application will not eventually be approved.

You may find it helpful to sign up for The Disability Digest's FREE Newsletter. My friend Brian Therrien runs The Disability Digest web site and he has compiled an amazing amount of information about applying for disability benefits and just about everything else you can think of regarding Social Security Disability . I sure wish I had come across Brian's site while we were going through the process! If you would like to read more about Brian, you can Click Here

Amy Toole

Because of the overwhelming number of questions that I have received regarding Social Security Disability, I put together a step-by-step guide to assist individuals in applying for and obtaining these benefits. My comprehensive e-book, A Practical Guide to Social Security Disability Benefits is already getting rave reviews!