Back in 2006, I wrote a blog post entitled “Narcolepsy as a Basis for Social Security Disability.” In that post, I noted that there is no “listing” for narcolepsy, meaning that a successful claim would have to rely on a “functional capacity” argument and that you may need more than strictly medical evidence to persuade your judge.
Recently, I received an email from a gentleman named Michael who asked for some additional information:
I have narcolepsy and even the maximum doses of medications don’t help. I keep losing jobs and will be losing my current job due to this. I do exceptionally well at my job when I feel alright, but I spend at least twenty hours of the day not functional. I’m currently telecommuting full-time and I still can’t stay awake and clear long enough each day to do my work. When I work on-site at a job, people accuse me of being an alcoholic or drug addict because I look terrible and slur my words and fall asleep several times per day. The only thing that prolongs my jobs is that when I’m feeling alright, I am sharper than most and unusually productive. So, they smell my breath and check my arms for tracks and I try to convince them that I’m just tired and that usually suffices for a while, but once again I’m losing my job. I am getting worse as I get older and I can’t maintain myself or watch my own child or regularly brush my teeth, etc. It’s a horrible situation and I’m looking at losing everything (job loss) and I don’t think I will be able to recover my finances this time because my narcolepsy is getting so bad. How could I get disability for this? What happens if a treatment comes around that works, can I get back off disability? If I can somehow start a business and hire other people to do the work in order to get off disability, would I be penalized for trying to get off disability? Even working full-time telecommuting, I get accused of being drunk or using drugs because I randomly sound drunk or on drugs even over the phone. It is so frustrating. Please advise as to what options I have, if any, and thank you for writing something up on the web about this.
Here are my thoughts: Yes, narcolepsy can be the basis for a Social Security disability claim. Please refer to my August, 2006 blog post referenced above. If a new treatment is developed, you may absolutely terminate your disability – in fact, if you return to work you are required to notify the Social Security Administration.
SSA encourages disabled claimants to try to return to work. You are eligible for a trial work period of up to 9 months in which you continue to collect your full benefit even while working, and you are eligible for an extended period of disability, which expedites your return to disabled status if you are unsuccessful in your return to work (after your 9 month trial work period). You can read more about trial work periods and the extended period of disability by clicking on the link.
I would be careful about the home based business idea. As I have said on many occasions, Social Security sees disability in black and white terms – either you are or you are not. If you perform part time work, or if you manage a profitable business part time, you will have an uphill battle convinciing Social Security that you are not engaged in “substantial work.”
Let me also suggest to Michael that he look into his rights under the Americans With Disabilities Act. Under this law, covered employers are required to make “reasonable accommodations” for workers with certain medical conditions. I am not an ADA lawyer but I think that this law may have some applicability here.
Bottom line – for Michael, he may very well have a viable narcolepsy disability claim. That claim will have the best chance of success if he is not working while the claim is pending and if he gathers medical, employment and personal observation evidence to support his claim.
I have had narcolepsy sent the age of 19,I was layed off my job because of working condition.Social security disability turned me down because of my age,so i went back to school with the help of texas reb.I have a B. S.degree in education ,it was not easy trying to go back to school and trying to fight this sickness it has taken a toll on my bodyand mine.I am 53 yrs old now i had to stop working because my health had got bad.The social security law has change over the years ,now they say that i don,t have enought credits to get funds to help with doctor bills and medication .I need a good lawyer to help me.
I have narcolepsy and I’ve been on LTD for 3 years. I applied for Social Security disability (with the help of a lawyer) and was turned down. I went through the entire appeal’s process including the hearing and still was denied. I was told that I could not do any of my previous work but I could do sedentary work(ie. laundry room attendant, small parts assembler etc). I have a background in Business and none of the work that was suggested had any relevance to my experience or education. I am now applying for SSI again in hopes that a new decision will be reached. I am not an expert when it comes to Social Security but it seems as if they will find anyway to deny you and with the diagnoses of narcolepsy, it’s a very difficult disease to prove it’s debilitating symptoms.
Dear sir,
I have recently been diagnosed with narcolepsy. After all these years it’s good to know that there was a reason for my listlessness and lack of energy.
I am a professional medical transcriptionist which means I sit for the duration of my job. Over the last couple of years it has become increasingly difficult for me to work a reasonable number of hours a day because of my chronic sleepiness.
The medications do not help and as I am getting older and metabolism is slowing, there’s really nothing that can be done. I was contemplating attempting SSI for myself, but I just don’t know how to go about it. I know they’ll probably deny me since I’m only 39, but I don’t know what else to do. My employer is only keeping me on out of loyalty, I have been going through pots of coffee a day trying to keep alert enough to finish my shift and still I fail.
Any suggestions?
Shannon
I also am looking info finnally filing for disability .I have had narcolepsy since i was 14 . Let your employer know about your disability and file for your fmla .By law they have to accomidate u and can not fire u if u fall asleep on the job .If u have medical insurance see a mental health professional for testing .Usually someone with Narcolepsy also has some mental health issues going on. The reality is that narcolpsy is not defined as a disability yet only Chronic Fatigue syndrom .Also if u have fallen asleep at work have it documented and they will contact your employer .
My narcolepsy has been a problem for me since I was 23 years old. I will be 53 in June. I have been on Provigil/Modafinil for the last 6 years, thanks to the great health benefits that I had but recently was laid off because of the massive CA budget cuts. According to the prescription and this is taking the absolute minimum amount, 300 pills which will last me 100 days, costs well over $3200!! Although it does do wonders for helping to eliminate excessive daytime sleepiness…the key word is helping. I still fall asleep daily and more than actually falling asleep, it’s the fighting to not fall asleep and trying to work while I’m going through that.
It’s wonderful that we have a law that tells employers they have to accommodate me and cannot fire me because of my health. The bottom line is: If I am unable to do my job because I’m asleep or loopy, I’m not doing my job.
I cannot understand why it’s so difficult for narcolepsy to be considered a disability. Why can drug addicts who have made bad choices get disability while narcoleptics, who didn’t get a chance to make a choice about our health, are denied. I have put in my share of hard work and can relate so much to what Michael wrote. Why is it that if I am honest about my health, I cannot drive because there is a question on the DMV application that asks if I have any bouts of unconsciousness and I honestly answer, yes, yet the very core of that issue isn’t good enough to obtain disability?
I hope the people that have posted previously to this site have persisted with their applications for SSD and have been awarded their benefits. Narcolepsy IS disabiling. I spent 14 years in the military. The last 2 fighting medical boards about my fitness of duty. I was diagnosed in 1996 with Narcolepsy with Cataplexy. 1998 I was seperated from the military with a 20% service connected disability. So basically they gave me a lump sum and said thanks for your service “see ya”! I was a single mom of 2 young children. I had an excellent record with the military. But the Narcolepsy was a huge disruption in my life. My drivers license was taken away because a doctor reported to the department of public safety that I have Narcolepsy. My ex tried to get custody of our children based on my inability to work. I didn’t even know I could apply for SSD for 2 years after my seperation. I applied, by myself, over the phone, never went into the office. 3 months later I was approved. I have been recieiving SSD since 2001. I am up for my first review. Made me a bit nervous, but I understand that this is a formality. My condition has not improved. I have tried working only to end up neglecting my medical and mental well being. Narcolepsy is the spontaneous undesirable need to sleep. How can one work when any minute they may have a sleep attack? Then when you know you are getting close to nap time you feel irrated and bitchy, unable to focus and communicate properly. After work I would sleep till the following work day. I was simply living to work. And not doing a good job at work or taking care of myself…..I wish everyone the best of success on their applications. Most importantly I wish all people suffering with Narcolepsy HAPPINESS. As that is my greatest struggle now. I do nothing, go nowhere all because I can not predict when I will fall asleep.
@JayJay: After I read about your situation I felt quite sad, for your situation and for mine. I’m currently undergoing an MEB and was wondering if you had applied for VA benefits as well as SSD? I was not sure if you could apply for both or if it was only one or the other? I hope all is getting better for you and your situation and your struggle. Take care.
What a horrible affliction we have. I have numerous other conditions to boot. If anyone knew how we felt on a daily basis! There are days I just want to cry I am so fatigued. I currently work in a mans field. I do lots of physical work and operate scissor lifts and on and off of ladders. I am overly cautious because of the fatigue. I really try to keep myself in check. When I worked an office job, I couldn’t stay awake at all. My company offered me a sleeping room but, that is all. I turned it down. I just felt that was to embarrassing. I feel like so many of the things afflicting me are just not understood and all we can do is suck it up. Thankfully, I do have a few ppl in my life that are very supportive and get it! Good luck to you all!
I was diagnosed with Narcolepsy w/Cataplexy last summer and on top of all the other mess I have , including Hashimotos disease, Peripheral Neuropathy, Fibromyalgia, PTSD, OCD, Depression, Agoraphobia, Anemia…and on and on….my employer’s disability processor cancelled my short term disability so now I am left with no income at all. Their so called medical expert is totally disregarding the medical records sent from all of the specialists I see on a regular basis. I have no life. I spent most of my day in my bedroom and I have cried too many times than I care to remember. People do not understand or care, Do they relly think anyone wants to be this way. I am a 47 year old female who has served 10 yrs total in the Army and Navy reserves. I was always active and very fit. Out of the clear blue, just over a year ago, my body started to fall apart little by little. As for the ADA that protects us, my employer does not even want to meet me half way and allow me to work a PT schedule…and I know that they should because they have way may than 50 employees…..they are a humongous worldwide company! I am going to apply for SSI and see what happens but I tell you, the world in general needs to open their eyes and take a good look at what people like us are going through. It’s scary, and your life is just not your own anymore.