The Mighty Logo

My Struggle to Get a Disability Pension as an Encephalitis Survivor

The most helpful emails in health
Browse our free newsletters

When people see me standing at the front of a group speaking, it’s easy for them to assume, “She looks OK. Nothing serious has ever happened with her health.”

When I speak, I want to tell people a story. A story of how low and desperate my situation was, and how far I have come. I want people to understand you really cannot judge a book by its cover. Today my life is good. I’ve adjusted to things I cannot do, and learned how to do some things in a different way. I don’t want a pity party, but I do want the world to understand what folks like me have been through. Mainly, I want to provide hope for those who are just starting on this journey.  In the following, words in italics are direct quotes from words I shared with other encephalitis survivors at the time.

When the reason for your disability is a rare disease, qualifying for a disability pension can often feel like an impossible dream. Applying for a disability pension is difficult. It is typical to be refused once or even twice, before achieving qualification. Without the support of my amazing husband, my own application would not have been successful.

I survived encephalitis — an acquired brain injury — in April 1999. Part of my struggle to qualify for disability was to understand how to prove and display the impact encephalitis had on me. I think it’s natural for us to put our happiest face forward, as we don’t want to always be complaining. When applying to qualify for a disability pension one must take steps in sharp contrast to this. It was very difficult to explain my struggles and failings. It was necessary to identify, describe and report my new vulnerability in detail, even though it hurt like hell to make it visible. While filling out this application, one must share one’s doubts and fears and remain very intimately aware of their own losses and limitations. It’s difficult to look forward to healing and improving while remaining so closely focused on the negative things in one’s life. For many months, my head was spinning with what to say and what to do. These people wanted to hear about me at my worst, and that was not news I often shared.

I guess the problem is, as I’ve decided to be calm, to be mellow, to take one day at a time, and to be satisfied with the very simple lifestyle I have assumed… Yes, I can be satisfied with all of that, but it’s damn difficult to dig up sadness, and point out to Official Folks where I should be.Where I would have been. Where I was heading to and cannot go anymore.

My application for a disability pension was refused – twice! When I asked why I was refused the first time, I was told, “Oh, we couldn’t find a report from your neurologist.” I told them that my neurologist’s report had been included in my submission. They replied, “It must have got lost. You probably should have qualified. Please apply again. It looks optimistic for you.”

When my second application was refused, I again asked why and was told, “Your application was reviewed by a new staff member who had never heard of encephalitis. We are so sorry, but she probably should not have refused you.” The disability pension office ended the phone call saying, “Feel free to apply again.”

I applied a third time, and was told I would have to testify before a tribunal. A date was set four months in advance. Over the following months I poured over my files and notes. I practiced remembering what to say if they asked this or if they asked that. I wrote down a script of what I planned to say.

Gawd, give me strength… I’m mailing my request for a tribunal. This morning. Aarrgghh, it’s so tough to get the stamina under this project, to spend the time creating the letter, especially the hours my husband and I spent Tuesday evening re-living sadness.

I am sick of digging deep, digging up the depths of my sorrow to share it around. Trying to recall what hurts the most. What I am now the most inept at. The new Wendy is not bitter. I have truly become well settled with where I am…. and the fact that I am here at all! I anticipate many quiet years ahead. So, if anyone has a magic wand, and can make this tribunal get on with it… please get this done before Christmas.

Then in October 2000 I wrote:

Hooray! I’ve received acknowledgment that I’ve applied for a tribunal appearance. They say it will probably take nine months for me to receive a final decision. OK, nine months. Well, I’ve certainly got nothing else to keep me busy (I guess nine months is a rather long time for me to keep my fingers crossed, eh?)

We were advised that my tribunal interview would be held on May 24, 2001. At 6:00 am the morning of the 24th we received a phone call. Our Granny, Jenny, had quietly passed away overnight. That day was Granny’s 101st birthday. This loss of a loved one truly exposed my system, my stamina and my emotional capabilities into cold reality.

When I sat in front of the tribunal that afternoon, the presentation I had been practicing daily in the past weeks was gone from my head. I sat on a single chair on one side of a long table. Four people sat across from me and I answered the questions they asked. I was giving what needed to be given, but nothing extra. After the first few minutes, I gently began to sob between questions. They offered to stop and I said no, please continue. All I could think of is that they were seeing me at my worst.

Granny with Wendy.

Then I thought about Granny and felt my strength return. I held my head high as tears ran down my face and I stumbled through answering questions as best I could. I couldn’t figure out how to answer some questions; with others I blathered on and on. Once the meeting was done and the questions were all answered I stumbled, weeping, into my husband’s arms. He guided me back to the car and we went home. Weeks later we were advised that yes, the tribunal felt I qualified for a disability pension.

I know that without my husband’s support, I would have taken my application’s first failure as a permanent failure. Many people do not have the stamina (or support of loved ones) to re-apply again and again when their application for a disability pension is refused. I am certain many deserving people have given up trying, folks who fall through the cracks and assume they do not deserve this pension. I can only thank Granny for her final gift and encourage others to keep trying.

Getty image by Osker15.

Originally published: May 15, 2018
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home