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The Disability Quandary


***this is a post that I started several weeks ago and have worked slowly on trying to make it make sense. I have given up on making it fluid, read with the warning that the further you go, the harder it may be to be follow***

On a webgroup that I participate in, a question was posed, “when do you decide to not work and try to start collecting disability.” This was a question that had come up in my life and one that I found hard to answer.

The decision to go on disability or not is very difficult, especially for someone who loves their job.

Before I tell the story of how I ended up on disability (it is long) let me try to explain how I feel about being on SS Disability. It is a two-sided coin. When I am having problems, it is a blessing. When I am level and in a good place I often feel guilty. Luckily I have people around who remind me that I am able to have more of the stable periods because I try to take advantage of the therapy opportunities that I can process during these good times. I am still trying to get the strategies deep enough into my long-term brain storage so that I can access the strategies when I am lost in the dark.

I didn’t want to go on disability, I fought it tooth and nail. I spent years going to school getting my Bachelors and Masters degrees in Early Childhood Education while raising 4 wonderful children, doing in home day care and being fueled by a manic high. And then the days of the depression would hit, and I couldn’t get out of bed, my kids learned to fend for themselves, friends brought in food, my husband bless his heart, worked wonders to hold our family together. There were long periods of time that I just do not remember at all. I now know that these were times when I had disassociated, a coping skill I had learned as a young child in order to survive, and as an adult has become an autonomic response to stress.

After being hospitalized twice, many suicide attempts, leaving my family and just running away because I couldn’t deal with another person even being near me, I was lucky to find a psychiatrist who worked with me to fight a hard fight to find a combination of medications that would give me some sort of stability. With the bipolar disorders extremes reigned in, I was able to complete my schooling and participate somewhat in the raising of my family. I graduated with my bachelors degree and was able to get a full-time teaching contract. My youngest at this time was 4 years old and my oldest was 11. I spent the next 2 to 2 1/2 years completing my masters degree, partially online and the rest at night classes. I was also able to piggyback an ESL (English as a Second Language), Math Specialist, and Reading Specialist Endorsements into and around my Masters classes. I spell out these things, not to brag, but, to show what a focused mania can accomplish. The problem is, the mania has to stop at some time and when it does it is often hard and fast. Once I had finished racking up the credits, the endorsements, the degrees, I suddenly didn’t have the “stress” in my life and the lack of stress (for lack of a better word) is a recipe for disaster in my life. Welcome to the looney bin once again. In the hospital, out of work for 6 or 9 weeks (I don’t remember), mentally and physically ill, back to work for 4 weeks before summer break, surviving those four weeks was pure hell, the only thing that kept me going was knowing it was going to end. I tried to heal during the summer. The weekend before I was to attend several days of mandatory training I spend in the mental ward with the understanding of my doctor that the med changes had to be done or forgotten because I had to be out of there Sunday night. Two days into the training I collapsed and ended up backing out of work, after many hours of discussions with my psychiatrist, was initially to be out on disability for 6 months (which was counted from the last day of contract I worked–the end of May). This turned into 9 months. She told me that she normally fights against patients going on disability, that she believes in working with the patient and employer (if patient wishes to include them, EOC says can’t discriminate, but we know real the world…).

Long story shortened, she ended up fighting SS for me to get disability, after finishing the last nine weeks of that school year in an accommodated setting, and the following year in an accommodated setting, not being able to make it the last week of school and ending up in hospital and resigning my contract. She and my therapist did their best to help me understood that I had tried , I had taken the time off, done the outpatient programs, the intensive therapy, gone back part-time, with accommodations, with breaks, it just wasn’t working.

2 Comments leave one →
  1. 06/01/2011 12:22 am

    Hi! I don’t think there’s anything wrong with going on disability. Lots of people I have met in my hospital stays have been on disability, and if it works for them (and you), great! Do you think you will ever get to a place where you can start to work again? I know that for me keeping busy helps keep my mind off of things. Of course, it doesn’t do anything to solve the problem but at least it forces me to be out in the “real world” interacting with normal people and trying to function in society.

    To quote you: “There were long periods of time that I just do not remember at all. I now know that these were times when I had disassociated, a coping skill I had learned as a young child in order to survive, and as an adult has become an autonomic response to stress.”

    I can really relate to this, and hadn’t really realized it about myself before. I have stretches of my life that I just don’t remember. It’s hard for me to remember much of anything in the past, and remembering positive things is especially difficult.

    It sounds like you’ve had a really difficult life, and I’m so sorry! Having been to the hospital a couple of times myself, I know how horrible it is. Anyway, hang in there and definitely don’t feel guilty about the disability. Whatever you can do to help yourself is super important!

    • 06/02/2011 11:18 am

      There are time when I start thinking I might be able to work at least part-time again, the problem is, I don’t know if tomorrow is a day that I will be able to drag myself out of bed, or if it will be a day that I can deal with other people or going somewhere. There are not many jobs that can accomodate a day to day change in mental ability to function in the workplace.

      My husband’s cousin needed someone to watch their baby, at first it was just two weeks while his parents were out of town. The baby was 5 months old at that time. It was so hard, it was only 4-5 hours a day, mom worked at home and was still only working part time and spent alot of time with the baby and I and even so I was very overwhelmed. then the grandmother (my husband’s aunt) began to have some heart problems and and watching him everyday was too much for her, even with grandpa’s help. She desperately did not want to give up watching him, as it was so important for her to see him grow, she had watched her other three grandchildren until they were one, and wanted to do the same for him as seeing him go to daycare would devastate her. I volunteered to keep him 2 days a week, tues and thurs, thinking 5 hours, with a day in between I could surely do, and my therapist and I had been talking about trying to figure out if I could somehow hold down a part time job and this would be a great trial run. So from Jan until last week I watched him 2 days a week. It has just about killed me some weeks. It was all I could do to hold it together for those 5 hours on the two days and then my poor family got the brunt of my frustration (for lack of a better word) he is a great kid, it wasn’t that he was hard to watch. It was me and my illness.

      So, now I feel back to square one. I don’t know if I can work or not. I will take some time and I guess try something again in the future and see what happens. Just knowing I have to be places and around people gets me wound up and paniced and stressed and it isn’t fair to my family when this happens, let alone my mind.

      The baby (or rather the little toddler) is now in daycare full-time. I miss him, I miss his hugs, I miss his smiles when I walk in the door, and his sad face when I leave. He knew when I was there he had my undivided attention. Unlike mom or dad, I had no other household responsibilities, so I could focus just on him. I hate that my brain couldn’t handle it. I so wanted it to be different than it was.

Let me know what you think of my post, good, bad and otherwise. I am always interested to hear what you have to say.

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