Epilepsy and Disability

[Matthew74]

I was reading the old post on Epilepsy as a disability, and thought I'd start a new conversation.

I believe E should always be considered a disability for legal purposes. I know a lot of people won't like that because they don't want to be labeled. I certainly would not want there to be mandatory "reporting" of any sort. Disclosure should be up to the person with E, and there should be no "consequences" either for having a disability, or for disclosing.

My concern is that having E is not like wearing glasses. E has a profound effect on most peoples's lives. Even if you are totally controlled and have no side effects, which almost never happens, you never know how long that will last. 1/3 of people are not well controlled, and almost everyone has side effects. Unemployment and underemployment, are very high for people with E, as is never getting married, and lower educational attainment. This is especially true for those who developed E as children. The reality is that for at least 1/3 of people with E it is to some extent disabling. It has serious consequences for the rest.

I have met a number of people with E (that I know of). Only one reported no seizures and no side effects. However, E derailed his early career plans while he was in training. Much later he had to quit a good job because stress was causing seizures. In the end he had his own successful business doing what he loved, didn't have seizures, and could drive. Even so E had a profound and limiting effect on his life.

When most people with E seek help (welfare, disability, accommodations, employment, transportation) they do so because E is a major problem for them. They may or may not be having seizures. They may be having abnormal brain activity, be limited by stress or work hours, have drug side effects, be unable to drive, have cognitive impairments, psychological issues, social impairments, have chronic fatigue, or simply lack experience and skills because of issues when they were younger. They may have any or all of these and look perfectly "normal", even healthy. If they are not having seizures, it may only be because they accept certain limitations, like low work hours and a low stress job, which may not be enough to live on.

The problem is that in spite of all of that, if they aren't having a certain number of observable seizures, none of the rest seems to matter.

I don't think that having a breakthrough seizure once a year should entitle anyone to all benefits, but I do believe that the real extent of the illness should be recognized. Most importantly I think that E should be understood as something you have 24/7, not only when you have a seizure.

 

[Ruth]

Hi Matthew, it is true that it affects our lives. People like me who have other health problems as well. I have E with Parkinson's Disease. The Parkinson's affects me more than the E.

 

[Fedup]

Matthew74

Epilepsy has a profound effect on all concerned, it is debilitating yet it gives the strength of resolve and in doing so increasing our ability to break free of the constraints imposed on us by fear. This fear is part of the reason there is mandatory reporting, the other reason is legal, for these reasons disclosure is not up to the person with epilepsy, it is a nice idea but not practical leaving the decision to the patient involved. It’s a question of legality.

Most people with epilepsy if not all have little or no choice but to look for some assistance, not because it is a major problem for them but because it poses a major problem for the supposedly normal person. The question is how humiliating is this process and why. What you mean is they may or may not be having seizures which are observed, the limitations we accept as you say does not mean or guarantee control or partial control of seizures, I am afraid I am one of those you talk about who has epilepsy all my life, I know no other life except epilepsy but that does not mean I except the limitations, even after this length of time and all the different drugs my cognitive ability is as sharp as a so called normal person. I impose my own limitations as does most.

It always matters the number of seizures you have or if you are lucky enough to have only a breakthrough seizure once a year, one cannot say nor should one ever say that just because you have a breakthrough seizure once a year, you are not entitled to benefits. Epilepsy is not something you acquire and throw away or pick up and it goes after some years, Epilepsy is for life as should the benefits be.

Epilepsy cannot and will not be understood until we as a people educate others about our plight. Understanding in part comes through education.

As you say “Most importantly I think that E should be understood as something you have 24/7”

 

[Belinda5000]

Some people who have epilepsy are so lucky that they go there seizures under control by surgery, like my husband but he still has things he can't do even though he hasn't had a seizure since 1972.I'll most likely never be controlled through, I'll never be able to drive, because of my seizures. I came to terms with this long ago, and it seems to be others that have problems dealing with my epilepsy.

 

[Phoenix]

I have Epilepsy for a long time and I am on disability benifets so i must
be classed as disabled

Sent from my GT-N5110 using Tapatalk

 

[seagull]

e is not passport to benefit system but if you need medication get through life or not allowed to drive then dla makes difference

 

[Fedup]

seagull

Epilepsy is not a passport to anything, if you are implying the misuse of the benefit system that is all to prevalent but it is extremely hard to live a normal life on zero, so the necessity for benefit is a realistic one and one which will not be abused.

 

[seagull]

I never said different

 

[resaebiunne]

Blah blah blah. Epilepsy is a disability. When I can't drive to work because I had a seizure it is disabling. End of story. I can't function as a normal human being because I can't drive and have to rely on medication for my safety and sanity.

 

[Fedup]

resaebiunne

If you rely on medication for your safety then something is wrong, your safety can and should only be decided by your sense of knowelege and awareness of suroundings. Medication can only control or help control one's seizures it is not possibable for medication to decide your safety if anything the oppisate would be true.

I would like to know how medication could keep you sane? Something I have never been aware of or realised all these years.

 

[knothing]

1)Having seizures can be maddening and if medications are reducing the amount of seizures then the medications can help maintain sanity.
2) Depending on seizure type seizures can be very harmful to your health so it can be a safety issue

Is Epilepsy a disability, Yes. Does having Epilepsy require one to be on disability, No.

My epilepsy does hold me back from some things like being able to work on 2 hours sleep and work 60+ hours a week or changing my work to night shift on a moments notice. I do have to use the Americans with Disabilities Act so that I am not treated different due to lack of flexibility. I also need to reduce lighting in my work space so accepting that I have a disability is fine since I need to be treated fairly and with respect.

Do I need to be on disability, no and I hope to keep it that way but I don't have full control of Epilepsy.

 

[Fedup]

knothing

Being told or having epilepsy is a shock to anybody's system and very maddening indeed but there is no medication that helps your sanity. Your sanity can be rocked indeed as mine was but to regain that sanity one has to draw on the inner self, your own self esteem, your will power to overcome and not to get drawn into a state of depression all of which is easier said than done.

You are quite correct, seizures can/are hazardous to ones health and therefore pose a serious safety risk, which one has to recognise.

 

[Matthew74]

I wanted to say that E is more than just having seizures, and that it affects you even if you aren't having seizures. So, people with E should not be told that they are "healty" when they aren't. Reducing E to a certain kind of seizures or a certain number of seizures is wrong.

The way I have been treated in the past was that there was nothing wrong with me if I wasn't having an observable seizure. Currently the legal rationale in the US is exactly that. Essentially they say that if you don't have a certain number of of observable seizures each month you are not "disabled", because when you are not having seizures you are fine. That's wrong.

My argument is not that having E should automatically qualify you for anything in particular, just that the nature of the condition should be recognised.

In the US a disability is something that limits one of life's "major activities". For at least 1/3 of people with E I think this is certainly true, and probably for most. The other part of the definition is that the person "is regarded as being disabled". I think that is definitely true.

No one should ever be in the position, as I was, of being told that they are "able bodied" by social services. If I don't qualify for benefits, that's ok. It's just want the reality of my condition acknowledged.

 

[masterjen]

You sound very passionate about the issues, Matthew, which is great. But, I think you are arguing/defending your points with the wrong crowd. You need to "get out there" and advocate for yourself and for all those afflicted with epilepsy to the general public, and especially those involved in policy-making when it comes to dealing with individuals with this condition. While doing further research about your cause, I wouldn't be surprised if you were to find people with other types of "hidden" afflictions who are in the same boat as those with epilepsy. Perhaps being involved in the advocacy area to assist all these people is your calling!

 

[Matthew74]

Thanks Jen!

I do think it helps for us to think through things for ourselves so that we can all talk about them with others. For example, I went for years thinking I wasn't having seizures when I was having many each day. I thought they were only "auras". When I applied for disability I should have reported like 90+ seizures a month, but I only reported a few a year. I myself don't really know how to explain brain fog, work making me sick, or what it's like to run around having a seizure that no one can see.

I suppose the least I could do is write my representatives. I'll do that.

 

[resaebiunne]

resaebiunne

If you rely on medication for your safety then something is wrong, your safety can and should only be decided by your sense of knowelege and awareness of suroundings. Medication can only control or help control one's seizures it is not possibable for medication to decide your safety if anything the oppisate would be true.

I rely on medication to prevent me from having seizures. It would be impossible to live my life without riding the bus, or walking down a street (on the sidewalk), or crossing a road. All of those scenarios put me in a potentially dangerous situation when I could have a seizure at any time without warning. Medication is there to help ensure ones safety by not having a seizure or making it less severe. I can't live my life without avoiding dangerous situations because then I would not have a life.

I would like to know how medication could keep you sane? Something I have never been aware of or realised all these years.

For example, I take antipsychotic medications for hallucinations. Many people take mood stabilizers or other drugs to keep them mentally functioning. Without proper medication, I hear voices commenting on my every move, cursing at me, telling me things that are potentially hurtful to me or others. I can't live my life with the paranoia or fear that comes with the psychosis. So the medication keeps me normal and I have lived to be happy with the degree of normalness that my medication can provide. Certain forms of epilepsy are associated with psychosis so hopefully that is all that is happening to me. Most people do not experience psychosis with their seizures and so aside from the seizures they do not experience any difference in the quality of their life whether they do or don't take their medication.

Edit: I'd like to add that that I used "sane" in a half joking manner. At the moment I have anywhere from 2 to a dozen seizures a day, depending on the alignment of the sun and the moon. After a while it just gets irritating to have a seizure, even as minor as a focal seizure can be.

 

[AlohaBird]

I wanted to say that E is more than just having seizures, and that it affects you even if you aren't having seizures.

The way I have been treated in the past was that there was nothing wrong with me if I wasn't having an observable seizure. Currently the legal rationale in the US is exactly that.

My argument is not that having E should automatically qualify you for anything in particular, just that the nature of the condition should be recognised.

In the US a disability is something that limits one of life's "major activities".

Seizure disorders are officially recognized as being disabilities under the Americans With Disabilities Act (ADA). Any employer or landlord who doesn't comply with that is breaking the law. Any friend or relative who tells you to "get it together" the day after a seizure is just being a butt-head.
I do know what you mean though that everyone is very sympathetic when you have the actual seizure but think you should just "snap out of it" afterwards.

 

[Fedup]

resaebiunne

It is good that the medication prevents you from having seizures, few of us are lucky to have control of our seizures and yet you say you are having anything from "2 to a dozen seizures a day". Correct all of these scenarios can put you at risk, you realise the risks yourself, so the medication does not decide your safety as you said "have to rely on medication for my safety".


Having a seizure can be irritating no matter the type.

 

[Belinda5000]

Blah blah blah. Epilepsy is a disability. When I can't drive to work because I had a seizure it is disabling. End of story. I can't function as a normal human being because I can't drive and have to rely on medication for my safety and sanity.

I wouldn't want to function like some of these so called normal ppl .
my sis is bi -polar having seizures and driving, or these drug addicts now is that normal?
not in my book.

 

[gbpackerfan]

There are many good points brought up in this conversation. I agree that E can be disabling in many ways. I agree that many people in the US have abused assistance programs. I feel that abuse of those systems have made it harder for those of us who have legitimate disabilities, to get the assistance that we need. I agree that many people with E do not need to or want to be labeled as disabled. I agree that there are many side effects in many different forms from seizures and E. I also agree that people who do not have E, cannot understand how disabling it can be without being "in our shoes" or having those symptoms described to them. I too, have family and friends that try to brush off what I am going through, when I am not having a seizure right in front of them that they can recognize or understand. Fear, Anxiety, Paranoia, Depression, DENIAL, memory loss, sleepwalking, fatigue, psychosis, shame, anger, loss of consciousness, loss of physical control of some or all of your body, and loss of bladder/ bowel function are many of the things that can be caused during or after a seizure. All of these things can be disabling. Some of them can cause us physical injuries. Some of these things can be connected (loss of bladder control/ shame). Some of these things can put us in very dangerous situations when it comes to every day things such as driving, eating, walking and riding a bike. That is a lot to consider, when I haven't even touched on medication side effects.