Frustration.
 

Ok, I have avoided posting here, but feel that I need to have some help with feelings and hoping someone might identify. A year ago I walked into the edge of a fire door. I had concussion, but then after a few weeks it became clear that I had done some more serious damage. I have a diagnosis of dysexecutive syndrome, but although I have most of the symptoms they are only on a very minor level. I am back at work and trying to continue with my life. I have learned to live with the few symptoms I have daily such as memory problems and tiredness, but I find that I feel a fraud. I feel like there is nothing wrong and I'm putting it all on. When I am tired I have some minor problems with speech and everything gets worse but if I can keep tiredness under control things aren't too bad. Anyway to cut a long story short does anyone else feel a fraud?

Willowleaf,

I think all of us struggle with wondering if our symptoms are real. Between the confusion from our symptoms and the momentary times when we feel back to normal, it is hard to figure out what symptoms are real and what are 'in our heads.'

Any chance to get a professionals assessment helps us accept these symptoms as real.

For many of us, we have a few symptoms that are prolonged or even appear to be permanent. We learn to use work-arounds and other accommodations to go on with our lives despite these ongoing symptoms.

I have been at this for decades. I have symptoms and dysfunctions in memory and cognitive processes that come and go making it hard to accept that they are real. I have to either accept these issues as real or consider that I am just being lazy and screwing up. I know that I am doing my best so these symptoms are real.

If we look at the situation, we can usually find a reason or trigger for our struggles. This can help us accept that we are not faking. Then, we just have to accept that others just don't understand. It is nice to have someone we can turn to who understands our come and go symptoms.

The YouTube series, "You Look Great" is about how others think we look fine despite those hidden struggles.

We need to remember that we are often the invisible wounded. Just because others can't see our wounds does not mean they do not exist.

My best to you.

I would say you should be giving yourself a pat on the back for being in work and still dealing with your symptoms. I don't know about your symptoms, but I have just returned to work part time with PCS and I am very tired and my pain is up - it isn't easy. I have no idea how things will be in a year, but hopefully a lot better than now. It isn't easy to return to work with everyone knowing you banged your head, everyone is very supportive, but it is difficult because many of the problems are hidden from view because it is a head injury. I have been quite open and told everyone I am still in pain.

Willowleaf,

Hi.

First, and foremost, are you under any professional care?

Your condition isn't one that should be without care, nor ongoing therapy.

What you are expressing as a "feeling of fraud" could very well be some part of the problems that can arise from the Dysexecutive Syndrome itself. Its hard to tell without ongoing care from a NeuroPsychiatric standpoint.

There is testing available that would help bring some of this to fore for you, and help bring about guidance of therapy for you.

If you are not under Neuropsychiatric care/therapy, I would recommend that as a first step.

I'm not sure if you have any resources on the topic; here is one from WiseGeek.

I know what you mean Willowleaf. I feel like that at least once a day. I am back at work part-time and I worry that others may think that this illness is just an excuse.... Ewoyn posted a link in the hope and healing section above about new brain imaging techniques which can more clearly show the injury. Somehow, affirming that the injury is real with a picture can be comforting.

You mustn't be so hard on yourself. A concussion can cause long-lasting effects. I believe that, for some people, having a pre-existing condition can make the brain more vulnerable, and they may have more pronounced PCS symptoms. If you are experiencing symptoms, and it is affecting your level of functioning, then it is real; you are not a fraud. It takes time for the brain to heal. Everybody's rate of recovery is going to be different. When I sustained a concussion, I was told by the ER physician that my symptoms would only last two weeks. Three years later, I am still dealing with some symptoms. Although I have made significant improvements, it took a great deal of time to get to where I am today.

Thank you for all your replies. I did see a neuro psychotherapist ( at least I think that was what he was ) a couple of times at the start, but in our area there are no free ones and he cost a fortune. He seemed happy it was a fairly straight forward case and that I needed to take things easier and learn to look after myself better. I still see the doctor if I am worried and he is fantastic as a close family member has the same problem so he really understands. I have been told to wait 3 years and see basically.
I started a new job in September which in some ways was easier as they don't know what I used to be like and accept me more readily for who I am now. Tiredness is the major problem. I just feel a fraud. I read other posts and feel that everyone else has a more legitimate problem than I do. Silly I know. Anyway thank you so much for you answers.

If we have PCS, concussion, head injury, brain injury or however it is described, then we all have legitimate problems. We are all at different stages but we are all still in need of help and support! You are very welcome if you need advice, and you might be able to help others through your own experiences as well.

Willowleaf,

This line struck me so harshly, , because I had such feelings when first struggled against my injury and kept working.

But as time passed, my symptoms kept evolving, and eventually won out against everything I tried to do to move on.....until I had to face facts, especially since the employer flagged me and terminated me.

I can understand how you feel. However, just as the link I posted, and I'm sure your own research has shown, the condition is real, the problems are real.

Therapies are available, and you may have to search hard, but you can find them and the best news is we are here as friends, sounding boards, vent recipients, all around listeners.

Best wishes, :grouphug:

What you say here is on the mark; every time I speak to work on the phone or in person I feel like a fraud. I even had a colleague today asking me how easy it would be to fake this particular illness. I don't think he meant any ill-will but the paranoid part of my brain is screaming out over the comments.

I have felt pretty low at times, wondering if I will ever get back to a job I enjoyed very much. I have also felt incredibly useless, particularly during my periods of confusion and not being able to get words out in conversation.

The other day I said to my wife that I could not see myself going through with a life without work. The boredom and lack of being able to usefully contribute to society would completely gut me. She rationalised it, saying if it did come to that I could actually be very productive by spending time with the family (my two school age children in particular). It could in fact improve family life.

Bottom line; I feel crappy at times, useless at times, an impostor at times. In others' eyes I may be all those things but when my brain does let me view things rationally (about half the time I guess) I can see that it is possible to lead a productive life. Just not productive in the modern, materialistic sense of the word.

Just got to have that support around me so nothing dumb happens during that 50% irrational time!

I totally feel that way sometimes especially when I try to explain constant 24/7 365 for 4 years pain. People say "Wow that horrible!" And then a few days later they say "Do you have a headache?"

I want to laugh at them and then I want to laugh at myself and then I want to cry. Is it that impossible that I can have a headache all the time? Is it so impossible that it isn't true and I am just feeling so sorry for myself that I think I have a headache?

All I can do is laugh because otherwise I would just be angry with the world who cannot believe that I have this much pain and yet get out of bed and spend 8 hours at work every day.

So, yes I feel like the fraud who everyone knows is a fraud except me.

Live Long and Prosper!
In Christ,
Margarite