Long Term Disability Pitfalls

Thirty five years ago, I developed a slight limp. For some reason, I had trouble making my right foot get into its shoe. I began to notice other women my age were able to run longer distances. I assumed I was out of shape. For a few months, I could not run at all. Later, my body decided I could run. It was a wonderful thing but confusing and frustrating. Dr. L suspected multiple sclerosis, but when the MRI came back with no sign of lesions in my brain, Dr. L concluded my symptoms were related to nerves. He suggested I see a psychiatrist.

Dr. Wayne, the psychiatrist, had a large practice. He listened to me and was very kind. At the end of our session, he said, “You don’t seem like the typically anxious person. You might want to check back in with your doctor if the symptoms persist.”

I went back to Dr. L with the news. He was baffled. He did not know what was causing my symptoms. He suggested I come back if the symptoms change.

In my mid-20s, I decided to ignore my symptoms and get a life. I was able to walk. I had a good group of friends. I began to work as a legal secretary. I took a photography class. I even got married and tried to have children.

For twenty years, I drove two hours round trip to my job in downtown Dallas. The commute never got better. The traffic only got worse. As the decades past, I noticed my stamina was just not there. I saw my neurologist twice a year and was on Avonex, which he recommended. My m.s. was manageable, for the most part. Then it became less manageable. Then it got to the point where all I did was go to work and come home to rest. Denial played many roles in my life.

When I was in my mid-50s, I was still able to make the commute and work full time, but it was clear for reasons that I don’t fully understand, my employer was less than happy with my “performance”. My work product was fine, but apparently, my office politics left something to be desired. When it came time for my annual review, my boss asked me for my job description. An independent contractor came the year before and worked with each department manager to shore up job descriptions and work flow. “You don’t have my job description?” I asked. Thus, began a difficult journey at work. Unrealistic demands were frequently asked of me. Along with my physical challenges, the emotional challenges made me feel like I had to leap tall buildings with a single bound. My leaping days were over.

It became evident to me as the months passed, that I needed my neurologist’s advice. Was it time for me to consider long term disability? We both agreed. It was time. I had soldiered on as long as I could.

I was extremely naive when I began the journey into long term disability. In the beginning, Company U, was very sympathetic. I was accepted shortly after I applied. An employee called me once a year to see how I was feeling. I thought that was very kind. I found it interesting that as time went on, the calls became more frequent and the person on the other end of the phone sounded as if they were very unhappy, even crying as they asked me if I was thinking about going back to work. The company knew I was not bedridden. In fact, during the first three years of my long term disability journey, I struggled with depression. I was no longer around people. I was no longer working on projects or had a goal. I was considering going back to work. Company U asked. I told them the truth. Yes, I was looking into part time work. What would that do to my long term disability. I asked. I received a vague response.

It took about a year before I found a decent part time job. When I finally did, I became a licensed insurance agent. I worked for a company with excellent benefits. I, of course, told Company U that I was working part time.

I had no idea there was a dark side of going on Long Term Disability. Company U hired someone to follow me. I realize that sounds paranoid. In fact, I had no idea they were doing that until my doctor’s office called one day to let me know Company U was dropping my long term disability. A few days later, Company U’s letter and phone call confirming their decision followed. The word “confused” does not begin to describe how I felt. Because I walked into an AT&T to pay a bill; because I drove to my part time job and barely passed an insurance exam, Company U concluded that I could work full time. In their letter, they explained their rationale. They used the services of a physician I had never met. He looked at the surveillance and my medical records and concluded I could work FULL time. I tried it. I lasted a week. Company U did not care, nor did they care what my neurologist had to say.

I learned some important lessons during my journey of living only on SSDI, and I am pleased to be able to share them.

1. Insurance companies exist for one reason, to make money. You are a liability, not an asset to them. You decrease their bottom line. In fact, some companies reward their employees with a bonus at the end of the year based on how many people they were able to drop from long term disability.

2. Protect your privacy. For example, during the time I was not working, I began a blog. Company U was calling me more frequently during this time. Their employee, “Beth”, seemed very personable and interested in my life. I told her about my blog. The words in my blog were used against me. They were twisted to fit the insurance company’s agenda. The agenda? To benefit the company, not me. Anything you post to social media, such as Facebook, can also be used to make a case against a long term disability claim. Make sure your Facebook settings are for “Friends” only or “Friends of Friends”. If you’re setting is on “Public” and you choose to attend a ball game because the weather is cooler, Company U can use that against you.

3. While I value the experiences and the people I met during my 2 1/2 years of living solely on SSDI and a very small (less than $200) annuity payment, if I had to do it again, I think I would have stayed on my long term disability and not gone back to work. The daily struggles of poverty were unbearable. The ups and downs of wondering if I was a wart to society, not to mention the poor health insurance I had to work with, were unfathomable. For the first time in my life, I realized were it not for family and friends, I would be homeless and helpless.

4. If I had not fought for the right to exist, I would not be. There were many peaks and valleys on my journey. I am only now able to put them into perspective. I learned a very important lesson. I wanted to live. I wasn’t sure how I was going to do it, but I was determined to try, but I was not always that determined. I learned to call friends who had dogs. Sounds strange? In some ways, it saved my life. I was divorced about the time I went on disability. My husband’s business was floundering, and I was earning the larger paycheck. In fact, there were a few months where he brought home no paycheck at all. He had no medical insurance or benefits. He was dependent on me, until I could no longer bear the weight. I was fortunate to have some very solid family members and close friends. My ex wanted to keep our dogs, and I had no energy to fight over that. Thankfully, most of my friends are dog lovers. I’m sitting with one of their dogs as I type this. I enjoy being around something that is glad to see me and dogs are always happy to see me.

5. Holding onto pride is not always beneficial. There are people who are naturally arrogant. I’ve never been one of them, but I learned on my LTD journey that I did have some pride that was hindering me. For example, when I wasn’t lucky enough to keep a part time job, I was making less than $2,000/month. An apartment in my area costs approximately $1,000/month. With food, electricity, medication, catheters and other expenses, that left me with very little to live on. I should have swallowed my pride and gone to the food pantry as a recipient, instead I volunteered. It was a rewarding experience, but, unfortunately, did not help put food on my table.

Everyone has struggles in their life. They come in different forms when a person has multiple sclerosis. As we age and find it difficult to keep employment, the hills that we climbed when we were younger, can become mountains. My story is not unique. It does, however, need to be told.

Yesterday, I heard from my attorney. Company U has agreed to settle, so I will get some money to live on. I will never receive the full amount that Company U’s contract stated in the beginning of my journey with long term disability. My suggestion to you and others? If you go on long term disability, don’t look back. Enjoy your life. Take care of yourself. Volunteer when you feel well enough. Share your story. It might just make a difference to someone else.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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