You know what, Love? It makes no difference what anyone else thinks of whether or not you need to be on disability, and you don't need to defend yourself for trying. Especially within this group where we are ALL struggling every day against those who dismiss us because we don't LOOK sick in their opinions. IIH is not disabling for everyone, but it is absolutely disabling to many of us.

My father-in-law was awarded his disability this past Monday after going to court. He doesn't have IIH, but is clearly and obviously disabled. He has been fighting for help for three years. Now, he can finally get the help he needs. Those who think disability is just a lazy way to be able to stay home and do nothing clearly have no concept of what it does to a human mind to have such severe limitations. Let them judge if that's the kind of human they choose to be and pray they will come to understand what a blessing it is to NOT have any idea what it is like to have a disability.

I'm going through the process too, and it is incredibly difficult for me. Sometimes I do get angry. Sometimes it seems like the only people who get disability easily are those who defraud and lie to get benefits. I'm not looking for a free ride through the rest of my life; all I want is medical care and to be able to pay for my meds. I want my life back, and that *is* my goal. I just want to feel better. It's easy for some to be dismissive because they don't NEED to understand. I can't worry about what they think or how they feel about my value as a human being. I can only to what I can to get better.

I'm going through the disability process too. I started a year and a half ago, but I got too sick to keep up on the paperwork. I'm now starting over again. It doesn't matter what other people think, well at least it shouldn't. I would be in a lot better place in life if I wouldn't have been too ashamed to just have applied and gotten through it when I first knew that I needed to.
I will have three times as much money coming in when it finally gets approved. Pride is expensive!
Anyway, we have to do whatever is needed to get by in life. SSDI is there for a reason. We aren't the people that take advantage of it. We are the people that would love to be better and working.
Hugs!
Brandee

I'm sorry you're having to deal with this.

Another perspective of "disability" is not necessarily in and of itself the lack of ability to perform any particular essential function of a job, but the inability to do so WITHOUT putting yourself nor the company at a liability.
For example; your seizures. Without full control of them that makes you a liability in the eyes of most company insurers. They don't want anybody to get hurt and they don't want to pay for damages either.
Have your neurologists recommended that there shall be NO type of work for you at all then?

Did someone say anything against getting disability? I think I may have missed that. Do what you have to do. I've looked into it a little, but I'm holding out hope that I am magically cured. Lol.

PTC and epilepsy... screw that, enjoy your time in remission and see what happens in the future. Don't worry about what anyone else says.

Glad you're doing well.

Nooooo, let me be clear...nobody here actually said one word against disability with me. I just know that a lot of y'all hear me come on and talk about going to concerts, going here and there, and what not, having great times, but even when I do these things...trust me, I do not feel fantastic head wise. I just refuse to let my daily headaches rule my life!

Even when my PTC was at it's worst, I went on a two week vacation to Nashville, which is heaven to a country music girl (we go for the Country Music Festival in June and for music awards, fan club parties, etc.) and I felt terrible, but I just pushed through because I knew I would have the time to feel terrible when I got home.

So again, no one talked bad...I am so sorry I made it seem so! I just know others out in the world will hear my family or I say that I am sick, because of the PTC and epilepsy which is not under control, and think oh, she is fine if she is doing this! That annoys me. :( We do what we can, even if it hurts! Even if we have to push through!

The concept most healthy people don't get is we can push through for a few hours, a day, even a few days if we are able but we can't do it for long stretches at a time. In order to basically survive we need to fall back into the pattern of stopping when we get a headache, ice our heads, take pain meds, absolute quiet, visually silent surroundings, or whatever it is each of us does to get through this illness.

Something healthy people, even most doctors don't get, is that we (or at least me) rests the whole day before an appointment and take a whopper pain pill the day of my doctor appointments so I can go there and have a half way decent conversation. The doctors think think I'm that good all the time. Not so. It took temporary preparation. If I have an event to go to it's mandatory rest the day before, heavy pain meds day of, and a day to a week of recovery afterwards.

That affects work. The measures above can't even be done steadily for a month. It is impossible. And work is not a special event, it is generally an ongoing and inflexible situation. That would make some people with IH disabled.

If I could find a job with no deadlines, no attendance requirement, a fail-safe process that would catch mistakes, and I'm qualified for the job then I'd love to go back to work. I'm at my happiest when I'm contributing. That isn't happening right now. I know I'll find the right thing.

Hey,
I've been through this process, was fortunate to get approved on my first try and I am so greatful for that given all the issues I have and how I don't feel well daily. Its a big decision to apply, and appeal but I would encourage you to stick with this if this is what you feel you really need. It does not matter what others think, only you know how you feel. I was told this while contemplating whether or not I should apply also a year ago, and I have to understand others don't know how I feel, only I do so this is something you have to do for yourself. I struggle daily with a lot of emotions around being on disability yet and I hope one day I can get off of it. I would be so greatful to feel well again. But this is what disability is here for like you said to help people who are sick.
Hugs, hang in there it sounds like having a lawyer on your side is going to be helpful and they will fight for you.
Mandy :)

Well said, buttercup!

Thank you Sea!

I understand ur position, i'm battling with being approved aswell bc of my age&education. I've been out of work 1yr&1mth now, my driving is restricted&my neurologist said last week that I was still not able to go back to work. I'm fight for my disability bc I know I am not able to be reliable on any job with my condition&the symptoms I suffer but most importantly what job could I find that wouldn't look at me as a liability, allow the flexibility I would need,,etc....I would love to go back to work, to have my life back and provide for my family but its out of my control. Yes, I agree sometimes we push ourselves to do thgs while in pain, take pain meds&such to participate in thgs but our bodies do pay for it later with a vengeance.....Cont fighting&know that people who do understand this condition will always have their opinions of doubt.

I am trying to get disability too, I got denied the first because my illness didn't make me disabled. I wish they could be in our shoes for one day. But now I got a lawyer that took my case :)

There are *some* disability lawyers that are a godsend...some, not so much, lol.

Johns Hopkins knew that I was having trouble getting medical assistance and they work with a law firm here...that firm handles medical assistance and disability and they took on my case for both. They are helping so much and are very informative. Thank God. It makes things a lot easier. They contacted me to get it started. I did not do a thing at the beginning.

My lawyer said kids cases are hard to win (I'm only 17) so he said he makes it harder but he believes he can win it. An yeah I haven't done anything really!

Yeah, I do imagine it is a bit harder...I hate that age plays such a factor. My lawyers told me straight up I was denied because of my age.

Yeah I know it's horrible, but hopefully I will get it good luck to you also!