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I'm Not 'Lucky' to Be on Disability Benefits Due to Fibromyalgia

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Many people think when you are on disability, you are fortunate. In fact, they will come out and say to you, “Oh you’re so lucky to be on disability, you don’t have to work and you still earn an income. What more could you ask for?” Well, let me tell you how very, very wrong you are.

I have been on disability now for 10 years. Prior to that, I had a job I thoroughly enjoyed. It kept me busy and it kept me socializing. I really enjoyed my job. Obviously there are always times when you have bad days at work, no denying that, but on the whole, I really enjoyed my job.

Then came the point where my doctor said that he was sorry, but there was nothing more he could do for me as I had debilitating fibromyalgia. His recommendation was that I get medically boarded. He then gave me a report confirming that I am to be medically boarded. I then had to claim disability through my insurer as I was covered for income disability. This was no easy process, but it was approved.

I felt great relief that I was able to rest due to my fibromyalgia being so severe. It was extremely hard to work while I had this condition. There were days when I could hardly walk due to the painful spasms in my body, not to mention dealing with all the side effects of all the medications I was on.

I felt like I had no purpose in life. I would wake up in the morning and not know what to do with myself. I was kind of stuck, patiently waiting day in and day out for a cure to be found. I researched so many things about fibromyalgia and tried so many treatments. All I wanted was to return to the life I once had and become the person I once was. Sadly, that wasn’t to be.

I have been on disability for 10 years now and what I wouldn’t give to go back to work! What I wouldn’t give to have my health back! What I wouldn’t give to be useful again in the work environment. These things were what made me feel like myself.

There are a lot of reasons why I am unable to return to work. I will highlight a few just so you can get an understanding of my predicament. In my job I used to drive a lot to see clients and suppliers. I am now incapable of driving a lot. I often get lost. I drive down streets I always use and all of a sudden I will not know where I am. This is a very frightening experience. I permanently drive with maps on and even with that, it will still happen. Sitting in a car for a long time is impossible. There is no such thing as taking road trips anymore. If I do, it is really painful. I can’t explain how sitting in a car in the same position for a couple of hours makes me feel. I have to take loads of painkillers in order to do it, and then I am only a passenger.

Then there are the cognitive difficulties. I would go into meetings and have to perform calculations I knew like the back of my hand. I would suddenly forget how to do them. I would get into a conversation and forget what I was talking about. I have a word finding disorder too, which is all part of fibromyalgia. I would be in a conversation and the word I wanted to say would be stuck somewhere, but I just couldn’t get it out. I certainly could not hold down meetings with directors and high-ranking people.

I have difficulty sitting in the same position for an extended period of time, for example at a desk. My entire body starts to ache, my spasms get worse and it is just excruciatingly painful. I get stabbing pains in my back, neck and shoulders and will then suffer for the next couple of days because of it.

I also have chronic fatigue syndrome. When I wake up, I am exhausted. I go through the day exhausted. I am not talking about feeling a little bit tired but you can push through, I am talking of physical exhaustion to the point I cannot function. For me, this is one of the worst aspects of fibromyalgia. I’m often so tired I am unable to clean my house, cook a meal for my family or even get out of bed.

Sometimes I might have a bit of energy in the morning, courtesy of medication I am on, but guaranteed by the time 3 or 3:30 comes, I am ready for bed. I am too exhausted to do anything else. Showering is exhausting, believe it or not. It is exhausting to straighten my hair. It’s exhausting to do anything you can think of.

As a result, I end up spending a lot of time in bed. It worsens my depression. I end up living in a space asking, “What am I actually living for?” “Why am I even here?”

I cannot enjoy simple things in life. For example, I like to take my son to Bounce, the indoor trampolines. I cannot join him on the trampolines because it hurts too much. There are so many things I am unable to do with my family. I have attempted suicide three times already.

I am on my own. My friends are at work, my partner is at work, and I am sitting at home with no company and nothing to do. I can try and pick up a few hobbies here and there, but I mean, how much of that can you actually do? So what you end up doing for the majority of the time is spending time in bed, watching Netflix or whatever it is that I want to watch. 10 years of that gets very, very tiring.

Then there is the constant pain. I am never pain free. The strong painkillers that could help with the pain are not readily prescribed by doctors, so I live with it, day in, day out, 24/7, 365 days a year. Try operating like that.

I love to read, however my short term memory is badly affected. I have to ensure I read a book in one day because if I don’t, I will have forgotten what I have read the day before and so I have to reread it. I will watch a movie or TV show and I will not remember watching it. I can then watch it again and it is all brand new to me. It is not nice. It is scary.

I have a gym contract, but I can only do low impact gym. One day I will be feeling OK, but if I overdo it, I will end up with extreme muscle spasms and pain and be in bed for two to three weeks. So I have to weigh the pros and cons. Do I do it and suffer or do I not do it?

I like to push myself, as I really cannot accept my condition, but it is considered a lifelong disorder with no cure. This is incredibly depressing. Nobody wants to live like this.

I really think people should start thinking before they speak. We are not lucky to be on disability. I am lucky that I was insured for disability, otherwise I would not be able to work and I would not earn an income. I would give everything I have to be be back at work. Right now, I am socially isolated. The only way I keep up to date with the goings on is through social media and my partner. I find I often have a lack of things to talk about because I am not experiencing life. I am staying at home and doing nothing.

So next time you come across somebody on disability, don’t ever say, “Oh you are so lucky,” because we are not lucky. All most of us want is to be working just like you — earning an income, being productive, having a purpose and doing things we want to do. Try to imagine yourself in my situation for the last 10 years, being unable to work and too ill to do almost anything.

Please watch your words next time. Watch what you say to people. Try to put yourself in other people’s shoes before making those statements. You might be surprised what you learn.

This story originally appeared on Fibro Ramblings.

Getty image by Daria Zaseda.

Originally published: January 25, 2020
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