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I just hate it right now.
Animalloverb
Posts: 64 Boards Initiate
Hey, well today has just turned into an absolute nightmare.
We got a call and they have said that they want to review things due to them feeling really concerned about me being there with how bad my epilepsy can be. But like it Is not my fault at all, I am doing everything my neurologist has been telling me to do, I am keeping my epilepsy nurses updated all the time but yet this place just seems far to scared to have me in due to my seizures.
It is really fustrating as I just move on, I have this condition for life and that is never going to change, I have a seizure and when I come out of it I rest for a bit then get back to what I was doing. I am not trying to let my epilepsy take away my entire life but everyone seems to be so much more scared about me then I am about myself.
I know I will one day prove everyone wrong and get somewhere in life but I would like the people around me to also see that and not just see me as some person with epilepsy.
This place is an education centre for those who have additional needs which is why I go there, I go and we basically have our own goals, we practice getting transport safely and also do work experience. I am very academically smart I am just there because nowhere will accept me in but this place is starting to seem sceptical about me being there due to how many seizures I can have.
I know they are trying to look out for me but what they are also doing is trying to make me out to be a failure.
I don't know but this conversation today was just very upsetting and now I feel incredibly awful.
We got a call and they have said that they want to review things due to them feeling really concerned about me being there with how bad my epilepsy can be. But like it Is not my fault at all, I am doing everything my neurologist has been telling me to do, I am keeping my epilepsy nurses updated all the time but yet this place just seems far to scared to have me in due to my seizures.
It is really fustrating as I just move on, I have this condition for life and that is never going to change, I have a seizure and when I come out of it I rest for a bit then get back to what I was doing. I am not trying to let my epilepsy take away my entire life but everyone seems to be so much more scared about me then I am about myself.
I know I will one day prove everyone wrong and get somewhere in life but I would like the people around me to also see that and not just see me as some person with epilepsy.
This place is an education centre for those who have additional needs which is why I go there, I go and we basically have our own goals, we practice getting transport safely and also do work experience. I am very academically smart I am just there because nowhere will accept me in but this place is starting to seem sceptical about me being there due to how many seizures I can have.
I know they are trying to look out for me but what they are also doing is trying to make me out to be a failure.
I don't know but this conversation today was just very upsetting and now I feel incredibly awful.
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Comments
I really hear how upsetting and exhausting this situation is for you. It’s completely understandable to feel frustrated when you’re doing everything you can do, and updating your Nurses for your epilepsy. Yet other’s fears then stops you from reaching your full potential, which really does sound unfair!
You shouldn’t have to go through this and from my understanding, support should be accommodated for every individual’s needs. However, this doesn’t sound like this is the case, instead they’re letting fear override the situation.
But please remember, this isn’t about your capability, it’s about their lack of understanding. Is there anyone you feel comfortable with talking to about this situation? For example, trusted family member or even your epilepsy nurses?
I would like to reassure you, that you are not the problem because of your epilepsy, you’re doing incredibly well under a very stressful situation and how you feel is completely valid! You deserve to be seen for who you are and not just your epilepsy. We’re here for you!
I understand how this conversation you’ve had with them could be draining and overwhelming to process. Is there any activities that can help you feel a little relaxed or distracted, just to give yourself a little break from a stressful day? How do you feel about this? If you can’t think of anything, let me know, I can always share some ideas with you? Only if you’d like to of course, no pressure!
I appreciate it.
There isn't really anyone I do feel comfortable talking to about this situation, I have tried explaining this to my epilepsy nurse so many times as she just says we will find something to help but that is not what I need, I am on medication for my epilepsy that they said I needed and it is doing its job but because of how long I went without an epilepsy diagnosis my case is that bit more complicated and I still have things that trigger my seizures even while meditated and my nurse knows that and she is doing her best to try and help but there isn't anything more she can really do.
It's just the lack of understanding people have of this condition, like yes I do totally understand how serious and scary this condition is as I am living with it, but I don't like letting things stop me and I never have, so when this phone call happened today and jus listening to what they were saying was awful, there are literally other epileptic people who attend and they are fine with that as they have been seizure free for like 2 years but because I still can have seizures often they are all of a sudden scared.
I just hate the fact that these people even have the audacity to just do me like that when I have so much potential and I am very capable.
I am a creative person despite my many conditions, I sing and make music, I draw. I have been doing so much to try and distract me from it, but I keep on thinking about it as it just doesn't sit right with me. They are calling again in like 2 weeks and then going to have a meeting so I probably will just end up fully having it on with them as what they are doing isn't right in my eyes.
it’s very understandable @Animalloverb
Years ago when I was meant to be in primary school I never was due to constantly being in hospital or going to appointments, and then also experienced trauma, then with secondary school I was also never there due to issues and also them not understanding me and not supporting me and basically they set me up to fail and even said I would fail all gcse's but I didn't fail them, and then when I was meant to be in college they kicked me out due to my epilepsy, and then I gave up after that and spent ages just sat around feeling like such a failure, and then after such a long time this opportunity came up and I felt so great about it and went for a little while and then had this phone call with them and the conversation and I just was like I am so not letting anyone make me feel like a failure or even set me up to fail again because I deserve far much more then that.
My dreams are so big and I am not letting anything stop me from achieving them anymore.
So even though I am feeling this way I am just very frustrated about the situation.