When You’re Not Sick Enough

 

Before I even get started with this article, let me state for the record, that for those who have been approved for short or long term disability, you deserve it. You’ve suffered just as much, if not more than any of the rest of us and I do not begrudge you a thing. In fact, I understand that it’s a double edged sword. You aren’t happy about the fact that you need disability, but to simply survive, it is much needed and warranted.

Now, that being said, I wonder sometimes exactly where and when I fell through the proverbial cracks. I have a diagnosis. I actually have five diagnoses. I have the MRIs and CT scans to prove the 90 year old woman inside is cleverly disguised as a 37 year old female powerhouse on the outside. I most definitely have the monthly medical bills, which probably will be finally paid off by my great-great grandchildren, to validate my repetitive emergency room visits. I have all of this and more, so why do I keep getting denied disability?

Simple.

I’m not sick enough.

That statement is quite an emotional conundrum to me, as I don’t know whether to laugh till I cry or cry till I laugh. How in the world can I not be sick enough? How can the tears I cry alone in the early hours of the morning because I know it’s going to be a struggle to even get out of bed, be belittled to the point of humiliation? I had so many questions swirling around in my head that it was making me dizzy until a former rheumatologist of mine, let’s just call him Dr. HeadUpMyOwnHiney, gave me the cold hard truth as apparently others saw it. I didn’t look the part.

Thus befalls the curse of the invisible illness.

I have been turned down for disability more times than I even care to share with you all. I have begged, pleaded, cried and would have gladly paid someone off, but the answer is always the same. “You are still able to work a full time job.” Yeah, I can. I can most definitely work a full time job. I can even get up at dark-thirty and drive an hour to said full time job, where I end up putting in a 10 hour day fueled solely on caffeine and Skittles. I can also come home, never cook for my family, never play with my children never put my son to bed and say his prayers with him as I kiss him goodnight. I can’t do that because I can’t climb the stairs at the end of the day. I come home and go to bed. I stay there until the entire process starts anew the next day. And weekends? Forget about it. Very rarely do I even get out of pajamas for the entire 48 hours of the “weekend”. (If you could see me, I would be doing air quotes as I show off my perfected eye roll). My body is broken, I’m sick more than I’m not and until recently the “Sunday” part of my “weekend” was spent with my head in the toilet due to one gnarly shot of chemo.

No, I absolutely am capable of working. I work my rear end off for the craptastic insurance I have that left me with thousands of dollars of medical bills and a penchant for passing on much needed testing because I can’t afford the out of pocket part of my deductible.

Here’s the stripped down truth: That healthy glow I have is self-tanner. It’s a nice orange color that makes me look like I’ve been rolling around in an open bag of Doritos because the rash underneath mixes with the tanner. I’m thrilled that my skin shade of “Oompa Loompa” impresses you. The bouncy volume in what’s left of my hair is a direct result of 45 minutes of teasing it with a fine tooth comb so much that Peg Bundy would be jealous of the height. The sharp business suit I wear to the doctor’s office is because apparently it is frowned upon to wear sweats, t-shirt and flip flops to work. You know…because of that “fired” thing that I try to avoid. And finally, that strong put-together exterior that just stares intently at you (I’m talking to YOU here, Dr. HeadUpMyOwnHiney) as you tell me you will NOT agree to support me in any litigation for disability, is because I won’t give you the satisfaction of using tears to prove my pain. I save those tears for when I’m alone in my car outside your office, where you can’t see me…where no one can see me.

I’m constantly reminded of the phrase “looks can be deceiving” because I live it everyday. I will continue to push myself until something gives, whether that be THE system or MY system, because I just don’t have any other choice right now.

Because I don’t look sick.

 

Article written by Senior Editor, Stephanie Kennedy.

Stephanie lives in Fayetteville, NC and is the mother of 3 always hyperactive and occasionally adorable children. She was diagnosed with Systemic Lupus Erythematosus in 2001 and in the time since, has added Scleroderma, Hashimotos and Celiac diseases. In her day-to-day life she is a Community Relations Specialist (aka, marketing and creative hodgepodge facilitator) and a part-time blogging snarkzilla. She can always be found somewhere in social media-land causing some sort of trouble. Find her on twitter at @steph_in_nc or on facebook at Stephanie Welborn Kennedy.

©2024butyoudontlooksick.com
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  • Wendy Jone

    Oh God. What I’d give for an actual diagnosis besides Somatic Disorder (from Dr. HeadUpHerHiney). While in the best shape of my life, after doing headstands one night as part of my yoga routine and feeling a sharp pain in my neck, I woke the next morning with an intense headache and a balance problem that feels a little like being on a floating dock, and cognitive impairment. Eleven years of tests and $$$$$. Some docs say the MRI shows issues; others deny there’s anything of note. Chiropractors do their best, but it’s 24/7 pain… A 24/7 headache for 11 years.

    When it first started, I kept pushing, thinking sooner or later it would be solved. And now I’m stuck–I’ve proven I’m “fine”. I don’t miss much work despite high stress there, and I work hard at trying to still have fun (yes, really). But I’m getting close to breaking. But…what good would breaking do, except confirm Dr. HeadUpHerHiney’s belief that I’m “delusional” and “exaggerating” and that my pain is “vague and minor”?

  • kouldb

    You’re right you know. Sadly. Human nature is quiet cynically, and aesthetically geared to only believe in what the eye can see—and even then it tries to deny it. And especially when someone is applying for benefits, that many doctors themselves resent. Tanning, wearing make up, and wearing suits to the doctor, isn’t going to help you one bit, since it’s actually covering up what symptoms you do have. I don’t even understand why anyone would want to do that. And anyone would not cry in front of their treating doctor/specialist, yet cry at the social services office, over the same things. It’s contradictory, and totally pointless. I’m not surprised she’s been refused. You can’t go to a doctor, and hide your symptoms. If you do, then don’t expect any help.

  • kouldb

    The only thing the voodoo temple did was prove that you weren’t sick in the first place—but in turn, it actually made you sick—in the head.

  • kouldb

    Incorrect—physical disabilities are denied every single day, by the tens of thousands. I have Rheumatoid Arthritis—I have visible symptoms, bloods test, x-rays etc etc to prove it—but I’m still not sick enough for them. The fact that the meds I need to take to control the RA, make me sicker still, are not considered at all because they say that’s a ‘secondary’ matter, and not related to the actual illness. I see people being denied every day. Just because someone’s physical disability is visible, there’s still no guarantee their claim will be accepted. So imagine those who’s illness isn’t quiet as visible as mine, how they must feel. Your comment gives away the fact that you don’t have a disabling (visible, or not) illness, thus have no idea what you’re talking about. You’re also incorrect about people with serious disabilities being a ‘lost cause’—they are not. Many can function and contribute, if only society, and workplaces were a little more flexible, and willing to negotiate a mutually beneficial outcome. You’ve managed to insult everyone who’s sick with your shallow, narcissistic, toxic words. One can only hope you haven’t, or never breed, for surely nothing good could ever come out of that.

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  • Deadrodentyping Blogspot

    Not true. The most common disability is back pain–but the courts will bend over backwards to find a way to say you don’t have pain, you’re a malingering moocher because being unable to work and live in poverty is so wonderful, if you can walk one step you can walk for 6 hours, etc. etc. etc.

  • DysfunktionDesign

    I can definitely relate to where you said about friends & family not understanding. Some friends saying things definitely hurt, but someone I had been best friends with for around 15 yrs saying she didn’t care that I was sick really hurt a lot. It’s made me not want to talk to the friends I do have cause I don’t want them to get tired of hearing about it. I already know they get upset when I have to cancel. Then family, I’ve had to block most of them from seeing my wall on FB cause they’ll say things behind my back. My mom is definitely the one there for me most but even after 13 yrs, she doesn’t seem to accept I have CHRONIC lifelong problems. It’s definitely frustrating.

    As far as the “why”, I definitely relate to the spoon theory that’s on here. It puts it in a way that healthy people don’t understand. I’ve had plenty of people saying try this or that, which I know they’re generally just trying to help, but it can really get old.

    I hope that your lawyer gets you the disability. Everyone deserves to try to live a better, happier life.

  • DysfunktionDesign

    I know exactly what you mean. I thought having multiple diagnoses would affect things, plus the things they, themselves, list as reasons for being accepted are many of what’s wrong with me yet in the denial letters, it’s such a contradiction to their “acceptable diagnoses” that it’s just plain stupid sometimes. I am lucky to have finally gotten disability but it wasn’t easy. It wasn’t till the third time I got denied that I got a lawyer & filed an appeal. When people look at me (I got sick at 15 but didn’t get disability till much later) they see my crazy colored hair, piercings & tattoos, & young which to many people means I have to be okay or else I’m faking it because of my looks or age. I had two part-time jobs as a teen, one in retail at 16 & one at a desk at 18. I had to quit even the desk job, only sitting, because I’d either be running to the bathroom to throw up, leaving early or not coming in at all. To me that was plenty proof I couldn’t hold a job. However the one biggest thing that helped in my appeal was the GI I had at the time, whom I traveled 3.5 hrs from VA to NC because he was a world renowned Doctor. He wrote the form that agreed I was disabled & wouldn’t be getting better. I had had other Drs do this form in the past at UVA but they weren’t as straight forward. Many Drs just say “I can’t tell them that” or “it’s up to them”, which is incredibly frustrating. Of course using a lawyer though, they get part of the money but it’s worth it.

    Outside of my own story, there’s a lot about the disability process that’s messed up. I’ve seen a woman on TV who was receiving disability for agoraphobia (fear of going out) yet she was out & on TV… What?!? Then when I used to be in a Gastroparesis support group, a woman shared her story about being denied multiple times & when she went for her appeal, she was basically chained to her wheelchair & could barely move, which didn’t even include her Gastroparesis symptoms like vomiting & pain. The judge actually apologized to her because it was clear she deserved it. Those stories just prove how screwed up it all is.

    My only one thing I might suggest is if it’s possible to get partial disability. My stepdad works for the FBI, getting up at 3am & coming home at 5:30pm & has PTSD, diabetes, chronic neck pain w/a “cage”, etc & even though he works, he receives partial disability. It might help you when you need to pay things or can’t get to work. Otherwise, I wish you the best of luck because nobody should be forced to feel like crap & unable to live their life at least better than it is currently, & when so many people who do have it that either lie or fake their way into getting it, it doesn’t make it easier for those that do.

  • **hugs

  • Hang in there! Fibro takes an average of 5 years to finally be diagnosed but they have to rule out all other diseases first. Took 5 years for me.

  • Hi there, I hate seeing others explaining their pain but at the same time its comforting to know Im not alone…one of the best that has worked for me “I havent worked awhile due to recovering from an illness” hope that helps **hugs

  • Melinda

    Hi! I am an RN, I worked in the ER and then Labor and Delivery, I also spent 15 years in the military. I was a go go go person. Traveling, visiting, planning, entertaining, gardening… Eventually the wear and tear on my neck caused 2 of my disks to disappear. I needed fusions and implants. Sept 2010. The hospital I worked at put my on LTD as I could not get approved to lift more than 5 lbs. The LTD ended. I never ever recovered from this. I became sick and sicker and freaking out bc as a nurse I should know what is wrong with me. I felt as if I was inside a tornado and spinning out of control and not finding a way out. Eventually I went to a Rheumy (my 3rd) and she and her staff are Angels in disguise. She knew within 5 minutes of me cry-talking that I had Fibro and possibly RA. Well of course I now have loads of other autoimmune issues that have jumped aboard! Time and time again I was denied SSD. I eventually had to get a job with a boss that was the devil on earth. This caused so mush stress that I catapulted down hill! I eventually quit. We lost our home, yes, embarrassingly foreclosed. Moved in with my parents. Gained 60 lbs. I have an attorney (since 2013’ish) we reapplied and we were denied. We applied again for a request to see the Medical Judge. It takes an avg. of 628 days to get an appointment in Washington DC with a Medical Judge. I am somewhere into 500…
    The constant pain, self esteem down the toilet, weight gain, depression, not feeling I contribute to life any longer. The friends and even family that don’t understand and have trainers that tell them they had Fibro 20 years ago…eat this, yoga, meditate, planks, 5 days a week at the gym and I’ll be cured! My own sister thinks her trainer knows more than my rheumatologist! Omg! I also found an email by accident by 2 of my closest friends…talking like 8th graders about what a pain in the ass victim I have become and they are really over it. It was Mean Girls. I was absolutely devastated. Cried for weeks and weeks. One friend I wrote off immediately. This wasn’t her first attack on me. The other friend of 20+ years I wrote a well thought out letter to. She replied with sincere remorse. But things will never be the same.
    I don’t know how to answer people when they ask me why I can’t work. If they don’t understand I’m petrified the judge won’t. My attorney thinks we have a good shot at it. He has an appointment with my MD next month. I have heard that very rarely will SSD get approved if you are 1) still working and 2) don’t have an attorney. I have not paid him a penny. He gets a percentage of my SSD if I get awarded. Tops out at $6,000. If I get awarded, I will get get paid retro to the first time I applied. If I don’t get awarded, he doesn’t get any money. If you have an attorney that is not following this plan, please reconsider.
    I miss my home. I miss my freedom to roam about the planet. I am 52 yrs old now, I have 2 adult kids and 2 grandchildren. They are wonderful as is my husband and my parents. Someone asked me why I couldn’t work, I answered constant pain for one, she said not even part-time I said no, she said what about from home…I said no. She stopped. I would love to have the perfect reply. Yes I do take narcotic pain medicines as well as methotrexate and Humira injections. Several other meds too. This is a place that took my doctor and myself about 18-24 months to get to. Lots of trial and error until we found the right meds for me. They are different for every one of us.
    When asked about the narcotics I reply…drive home in the dark during a horrible rainstorm without your glasses on and tell me how it works out for you. Don’t take your blood pressure medication…your heart will get addicted to it.
    I really need to know how to answer the why can’t you work question! Please offer up how to reply to the “why can’t you work and why can’t you go to the gym 5 days a week?” Maybe someday I will be able to but I’m not there yet. I don’t look well. Besides the weight gain, I have loss any luster my hair once had, I have always been pale but even more so now. It takes all I have to dress up and go someplace. Oh and I have no problem with my attention span oh look at the kitty! Thank you!

  • Glued Together

    MIchele – thaks so much. I was DXed with the invisible YOUMUSTBELYINGCUZYOULOOKFINE lupus 15 years ago. I had an ANA test to determine if I had MS or Lupus to explain these (now I know they are called) flares of deep bone pain and days of intense flu like symptoms. The prompt of those incapacitating flares and the butterfly rash and other rashes in tandem with as well as intermittent swallowing spasms, qualified this investigation. I saw to rheumatologists. The first had an office that was far from my home and a bathroom that was filthy nasty. A doctor who did not do blood tests and offered ultram which I declined to take or want. I was treated like a drug seeking liar. Even the dr treated me like a person who seemed FINE. Oddly enough, utracet or ultram is now classified as a narcotic. I don’t want to take narcotics so her presumptions of me being a druggie were completely unfounded. She also offered prednisone which causes me to hallucinate and come unglued. Declined that as well. On to the next rheum who was closer to home, but had a garbage can resting atop the waiting room chair next to me full of tissues and – imagine this – trash. Same scene – wanted to inconclusively prove I had lupus. There is no such test. A neg ANA does NOT rule out Lupus and we go by the symptoms. HELLO? What med school do these Drs go to? Don’t get lupus in Atlanta.
    So I end up in NY. I go to a gyn for annual. New doctor. Asked her about estrogen as I am in peri meno. Mentioned Lupus and that had the first flare a few wks ago after about a yr of quiet. She said she would not prescribe estrogen until I saw a NEW amazing rheummy in the area (or any rheummy) and got clearance for it. I asked why. She said blood pressure is a concern in lupus patients. My blood pressure was below 120/80 in her office as well as my entire life. Actually below that number – to the point where I have to eat salt just to raise it. I am not taking time out of my day to go to yet another rheum and I have no clue the names of my prior rheums as I spent five minutes with each and decided I would handle this without meds the rest of my life. After a long, messy divorce, a move across the US and losing everything, I don’t know where half of my paperwork is. Nonetheless, I have seen an in network Dr for the last few yrs in this new area and recently had a checkup. I mentioned lupus but we did not discuss it much. In fact she said I was going on too long at the annual and said we would need a second appt if I wanted to discuss anything more. Are you kidding me? Bill insurance again. Not like I was going to treat it. So now the gyn calls and repeatedly asked for my previous records from ATL which I said no – they will also not refer me to the new rheum until I provide such records (again – I do not have them). So I need estrogen but gyn will not prescribe until I see a new RHEUM who clears me for taking estrogen. She also will not refer me to this rheum (they require referral) unless I provide the records from previous RHEUM of over 15 yrs ago – who I saw once each. I AM NOT TREATED FOR THESE THINGS. Christ I hate having to prove I have flares. I never tell anyone because they don’t think I look sick so I must be faking it. I don’t even want pain killers! I want estrogen FFS and my blood pressure is NOT A RISK. What part of these so called Doctors is rational or logical? Cover your ass for some imagined BS and make the patient hostage to appointments and meds they don’t even want. WAY TO ALIENATE!!!!!!!!!!!!!!!!!

  • Michele

    You sound so much like me…I don’t look sick so therefore I must not be as sick as I am claiming. I have to push myself as hard as possible to go to work or the mortgage, electric, and etc will not get paid and I will be homeless. I have not been able to apply for disability because of the same reason you have been turned down. There needs to be some way for those who struggle from medical conditions to get the help they need and not have to kill themselves trying to work.

  • Riel

    Hahahaha. That`s hilarious bravo troll.

  • Dinchakka

    The way this works is that all the people with serious disabilities are a ‘lost cause’. The reason that some get aproved is to hide that. Physical disabilities are hardly denied because none can argue with what they see.

  • walker

    I can so relate to that. Part of me feels bad for breaking down and buying paper plates, and part of me is just sick of the pile of dirty dishes, and being unable to stand for long enough to wash them.

  • RaelV

    Your husband is trying to save your life. You can’t go off of them immediately but they will kill you eventually if you do not find a way to free yourself from them. Most prescription medications were designed specifically to “cull” people like you from draining on a fragile economy. You should research the governments population control methods. Think this sounds crazy? Then perhaps you sheeple haven’t been doing your research. I am sick and dying just like you people but I realized too late what the government was doing to me. Nearly every food you buy pre packaged, every beverage that comes from the store, those cigarettes you smoke, in many cases even the air you are breathing has been intentionally contaminated with ingredients that are highly toxic to the human body. The government has been caught hundreds of time doing this. If you still think this is a load of crap do me a favor and thoroughly research how the FDA introduced those poisonous artificial sweeteners to America. Or read this article where the government tried to kill this girl but her family didn’t let them http://medinagazette.northcoastnow.com/2015/10/02/attorney-amish-girl-who-fled-country-to-avoid-chemo-is-cancer-free/

    You are like a fish swimming in a bowl of tequila…and you wonder why you are dying? You may want to watch a few documentaries that opened up my mind to what the government was doing to me. First and foremost try the move Food Inc. Secondly, try out the movie Fat Sick and Nearly Dead. These two films changed my life and what I put into my body. One thousand blessings on all of you. I pray that the God of mercy will shine upon what I have said an reveal it as a truth so you may research this and begin to heal your bodies and souls! You can not live like this any longer! Free your mind, body, and soul with knowledge. Do not let the government cull you like sheep anymore. If you want your health back you will have to fight for it! Social Security benefits will not heal these. I know you need money to survive but after you watch the documentary Fat Sick and Nearly Dead you will see that you can regain your health even if you are terminal and dying. I saved my life by cutting most of the poisons out of my life. I was sicker than some of you have described and it took me three years to be nearly 100% again.

    One final note: Try googling the term “the great culling” and see what you find. 🙂

    -Someone Who Knows the Higher Demons Within the Government

  • RaelV

    You should know these people are aware of the subject matter of the current discussion. They are spammers and not people with legitimate stories. They make a living by scamming people who are sick or otherwise vulnerable. You would be surprised how many of these sad people have already been scammed by Dr. Crapbar and his voodoo demonic worshiper friends. I can see you guys are unaware of this underground sect on the internet by the way you are responding to these parasites. These messages should be removed for the safety of your readers. Sick and elderly people are the number one victim of these financial parasites.

  • Ras J Baraka

    I am very happy to share this great news about a great VOODOO TEMPLE who cured me from this deadly disease, i was suffering from this disease for over 8years now and I couldn’t find cure to it, on this grateful day i was browsing on the Internet when i saw a woman testifying about a powerful and great VOODOO TEMPLE) who helped cure her cancer disease and so she also mentioned that this same man can equally heal and cure any sickness with herbal medicine, so without wasting anymore time i contacted him on his email ([email protected]) and i explained all my problems to him, he told me that I should not worry that he is going to help me prepare a herbal medicine and he will send it to me. He told me to use the herbal medicine according to the laws that will be on it so i abide to him, and I started using it, before I know it i was feeling changes in me, I later went to the hospital for medical check up and to my surprise i was completely cured from HIV. I am very happy that i am safe from this disease with the help of GREAtT VOODOO TEMPLE. I would have been a dead man now but all thanks and gratitude to GREAT VOODOO If you are out there suffering from any kind of diseases quickly contact this powerful man via his email ([email protected]) and phone numbe(+2347058925589) Mark my word “He will never disappoint you.

  • Crz

    I can’t even think of applying for disability. Going on three years and I still don’t have a diagnosis! I don’t even know how to talk about my condition. I’m told it’s not a disease. It’s like I have a chronic case of That Which Must Not Be Named. I’m pretty sure disability pay doesn’t cover unnamed nondiseases.

  • Molang Cook

    stop tanning and wear frumpy clothes to the doctor, who cares what people think.

  • Renee Barsh

    If you have a lawyer they can speed up the process for that. My lawyer just told me yesterday that if I get an eviction or I can’t afford my electric bill which will result in eviction they can get my case heard by a judge faster. I hope this info helps and I hope you feel better. I’m in the same boat as you, not that I’m glad that others are going through this as well but I’m glad you are all here and I’m not alone.

  • Renee Barsh

    If I could ask what caused your PTSD and how does it affect you. Mine has turned me into an agoraphobic and I’m terrified of men I don’t know. It’s so hard to deal with because I was once such a people person, I worked in the medical field but now I can’t even be around more than a couple people at a time and I only leave my home to go to the doctors or if there is an emergency with one of my children. I love my house but it also feels like my prison because of what someone else did to me. Any thoughts or suggestions on how I can try to overcome this?

  • Renee Barsh

    I have also been denied because of my age and education level. Though I feel excruciating pain everyday most of my medical issues are unseen. I now have to go through a hearing God knows when for a judge to look down his nose at me. I suffer from PTSD, agoraphobia, epilepsy, anxiety, panic attacks, fibromyalgia, and lupus but because I don’t look the part and because I have a good education I’ve been denied twice now. My lawyer has high hopes for the hearing but me, not so much because it would mean leaving the safety of my home to go there and as an agoraphobic even though I haven’t gotten a date yet I am constantly panicking over the whole situation. Due to the epilepsy I can no longer drive and there is absolutely no way I could possibly take public transportation, that’s just a seizure waiting to happen. Even family members look at me funny when they hear that my doctors have stated that I’m disabled and that it’s not safe for me to work. Just this week my daughter told me about a friend of hers that is half my age and she was approved for benefits because she has ADHD, all I can think about is how is that fair, one medication can help her when I’m a walking pharmacy, not to make light of her disability but come on. I don’t think it’s right that they can pick and choose who is sick enough, if a doctor deemed you disabled then that should be all they need.

  • williams

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  • PAwitbPOTS

    I have a condition which prevents me from remaining upright for more than a few minutes at a time– otherwise I will either pass out or end up with a raging migraine where I can’t speak. In addition I have a brain mass that the Drs are “watching for now” because removing it is extremely dangerous. As a result of the mass I have double vision, dizziness and vertigo ALL THE TIME, which you can imagine makes it difficult to drive, work, use a computer (thank goodness for autocorrect!), etc. oh yeah I have epilepsy which is probably triggered by the lack of bloodflow to my brain when I stand up. I have partial seizures a few times per week but honestly I am not disabled by them. Not being able to stand up to go to the bathroom or make my kids a sandwich is disabiling. Not being able to keep my eyes open while riding in a car because of my vision issues– that’s disabling. Forget about being able to go to work…I can’t get off the couch most days. What I would give to be able to work again– I can’t even tell you!!!

    But yet I just got denied SSDI benefits.

    I am eft with a lot of question, the primary being “How the HECK can I work if I can’t stand up or even see straight?!”

    Good luck to everyone who is disabled here– either by the SSA’s eyes or their own!

  • LLB

    Everybody on here needs to be VOCAL about what they are going through due to the reason below. Seriously, y’all.

  • LLB

    And the conservatives say we really shouldn’t have so many people on disability because they are just lazy and should be working.

  • MoMo

    Myself and my kids. My husband left because he’s not a real man and now I finally got a rare genetic disorder finally an answer! now he wants to be nice because now I’m not faking it!. Genes don’t lie. BAH! if you left me while I needed you trying to figure out this lifelong illness. diagnosed at 41. Then I don’t need you now or ever again. It’s sad people think they can throw us around as if our feelings don’t exist. I lost EVERYTHING(HOUSE, CAR, BANK ACCOUNT, AND STORAGE UNIT CAUGHT ON FIRE, SO EVERY MEMORY I CAN’T REMEMBER ANYMORE IS GONE FOREVER) SO SAD AND I LOST EVERYONE(FRIENDS & FAMILY)! EXCEPT MY KIDS. THEY’RE MY LIFE. unfortunately THEY LIVE WITH IT TOO JUST ON A VERY SMALL SCALE SO FAR THANK GOODNESS. IT’S ALMOST 3 YEARS BEFORE I GET A DISABILITY HEARING AND I CAN’T WORK ANYMORE. I CAN BARELY WALK FROM A CAR TO THE STORE. I USE MOTOR CARTS TO GROCERY SHOP IF I GO. GOOD LUCK TO U!!! I HOPE IT’S BETTER THAN MINE.

  • Chelle1967

    I have to say I completely feel for you all. I was approved for SSDI after applying in Feb was approved by April and got my first payment in August. On the other hand my daughter has a rare autoimmune disorder, and recently dx with fibro, OA, pyoderma gangrenosa on top of the PCOS and Acne inversa or hidradenitis suppurativa. It took me fighting hard for her, even so far as sending color photos of her open wounds including an abdominal incision that came completely apart 6 weeks after surgery. She’s had a total of 17 surgeries, real ones under anesthesia never mind the small local anesthesia debridement ones. It took 4 years to finally get her approved. My brother in law who has worked hard all of his life has a horrible disability most days not even able to get out of bed and had an attorney and was denied, he was told at his last hearing by the judge to go back to work, there wasn’t enough wrong with him. He has a good heart and means well but he comes across as a know it all or abrasive and people who do not know him judge him on a personality trait. I helped him refile and he got his first denial from that filing the other day, he tells me that we have to call to be able to appeal. Might not be approved to even appeal? I have not seen the paperwork as of yet so I don’t know. My husband had 3 strokes in 5 years and he was approved the first time as well. But because he had my help in filling out the paperwork. It is unfortunate that we have to go to such lengths to be able to use what we’ve paid into for years. He has pretty much lost everything he worked his whole life for and why? Because he doesn’t “look sick”. Until someone has experienced chronic pain or chronic illness they truly can not understand.

  • Sherri Johnson Childres

    This echoes my life experience with RA along with interstitial cystitus, angina, fibromyalgia, retina issues that are aggravated by some of the many meds. I was diagnosed with RA in my early thirties and I am now 60. Still struggling everyday to get up and go to work so I can have insurance to pay for doctors and meds that I need to get up to go to work. Awful vicious circle!

  • Daisy Rothschild

    So well written, and so true. Glad to find others, because you sure can feel alone.

  • Daisy Rothschild

    I too, had severe endometriosis, at 19 I’d had surgery to remove a cyst, and by 30 I finally had convinced an OB/GYN on a full hysterectomy. It’s very hard to convince a male doctor that you are NOT going to change your mind about having kids. I had to sign a waiver not to sue. I didn’t regret it one day, not one. The relief was worth it. Keep looking til you find someone reliable, professional, and listens to you.

  • Daisy Rothschild

    I don’t know… unless that is your experience, my recent experience last month is that it is not. Not by my judge, anyway.

  • Daisy Rothschild

    …and, don’t do it. I was told pretty much the same, but it took 1 year to the first rejection, then another complete year to get the appeal rejected. Just sent in the last appeal, but doubt it will do any good, even with an attorney. It depends on what your disease is, and check into if it’s one of the ‘approved’ diseases they consider valid. Fibromyalgia is not one of them, as there is no specific test.

  • Debbie

    I’m so sorry….I could have written this myself…I totally understand. I’m sitting here now with wet hair, half dressed, because I didn’t have the energy after my middle of the day shower to even get dressed and dry my hair. The shower took all my energy. I was supposed to go out tonight to celebrate my one year anniversary since my open heart valve replacement surgery that was supposed to “fix me” and I don’t even have the energy to go. Other health issues (inflammatory bowel disease) take away whatever the heart “fixing” has given me. I understand….and I cry with you….alone, because my husband got tired of having a sick wife, so he divorced me. Hugs to you…and all the others.

  • Rhonda Worley-parsley

    One of my doctors (married to a lawyer) told me to write down all of my documented illnesses. I did…all 28 of them…and I was approved immediately. I think it depends on how concisely and thoroughly issues are presented. I also knew exactly what my medical records said. I got a call from a SS worker saying they wanted me to see 2 doctors. I asked HOW their general practice doctor was more qualified than my doctor who was known around the world and recommended by MAYO. The woman said that he thought I was in remission. I knew instantly that she had not read the last report. He started every visit with: “evaluate for possible remission.” Then, after going through the visit notes, concluded “NO evidence of remission and not expected.” I was then told I would not need to visit their drs and was approved. That was in 1995. I had also checked the “blue book” to see what was required. I knew that I had at least 5 conditions that could qualify a person for SSDI and I knew what had to be documented. I think many people list the condition and fail to describe how that condition manifests itself in their life.

  • Rhonda Worley-parsley

    I have a cousin who responds to people who say she does not look sick, “Well, you don’t look stupid either, but you are.” She has had over 30 surgeries including 5 back surgeries and knee replacement. She also has arthritis and COPD.

  • Rhonda Worley-parsley

    I hope you have a good pulminologist. My son had asthma so severely that he had 2-3 hour long attacks a day by age 8. Tests showed one third of his lungs were obstructed by the damage from asthma. I heard that he did not look sick by a school nurse and pe teacher. They shut up with the pulminologist sent a letter saying that his life was in jeopardy due to his attacks and that he should not engage in any aerobic activity at all. WE ultimately found that acid reflux was so severe that he was in active reflux 30% of the time and this was after the first major surgery for the condition (nissen fundoplication). He had a second surgery at 15. He missed about 6 weeks of school a year except the 4th grade year when I homeschooled him due to illness and half of his freshman and sophomore years due to major surgery. He will always have asthma and other conditions, but he graduated high school and has his first college degree and is now a respiratory therapist. Don’t give up. Good luck!

  • Rhonda Worley-parsley

    I went through that along with endometriosis, PCOS, fibroids, and adhesions around the uterus, fallopian tubes, and ovaries. I found that the very best type of doctors to treat me were reproductive endocrinologist. I had 5 recommendations for a hysterectomy by the time I was your age and had finally agreed; however, I got engaged and the surgeon saw my ring and refused to do the surgery. I did not know what to do. A friend who is a nurse and had a friend going through IVF got me in to see a new RE. She changed my life. I was able to go on and have 2 kids, but she believed me and worked with me. She referred me to an incredible OB for my care, but she was always involved. I wish you the best, but thought I might give you the suggestion of finding a RE. I worked with mine for years before I had kids and without her, that would never have happened. Once I had the 2nd, I had a hysterectomy and was very happy with the relief. Good luck.

  • Rhonda Worley-parsley

    I hope you are not suggesting that a person with asthma might not be disabled. All in my family have asthma, but one of my sons in particular has asthma. For years, he had 2 to 3 hour long attacks a day. A third of his lungs were obstructed by the damage from asthma by the time he was 9. His pulminologist ordered that he not be allowed to do ANY aerobic activity–no running, jumping, jogging, etc. As a kid, he could not even play a game in gym. He had to sit on the sidelines. He would have been a fabulous athlete, but he could not participate in any games. There were times that simply walking in the school door resulted in an attack. By the time he was 8, one of his doctors talked to him about death because he heard a news story about 5000 Americans who die from sudden asthma attacks each year. His doctor told him that his asthma was that serious and that was why he had to do every single thing we told him to do. He could not even be around freshly washed laundry because the tiny amount of lint in the air would cause an attack. I swear that I went for years with little to no sleep because I was terrified he would have an attack and I would not be there. Even as a teen, we had a bed for him in my bedroom because in a sudden attack, I could not get to him quickly enough. We had to have an epi pen with us at all times along with a portable nebulizer and other rescue meds. I had to watch him in ICU. I had to talk to doctors about how we had to turn the situation around…we just had to. By age 8, he was on adult doses of medications. I sat as foam would pour from his mouth during attacks. I had to look into his big brown eyes when, as a young child, he said, “Mommy, I know I could die from this.” Thousands upon thousands of dollars and specialist after specialist and surgery upon surgery later, he is better. He is now a young man and is a respiratory therapist in order to help others. I don’t know how long he will be able to work, but to suggest that people are on disability due to “Asthma” as to suggest that is just not a valid diagnosis is as insulting as you find others telling you or your partner that you look okay. I marvel at my son’s refusal to give up and how he cares for me because I am disabled. We both know that he must have a job that provides long term disability benefits because he has many other medical conditions–many that normally don’t hit kids his age.

  • Tania Wright

    I spent the last 2 1/2 years fighting for disability for my invisible illness and of course I was not considered “severe” I was only considered to be moderately disabled and because of that I got denied. I can only work as a server for 2 lunch shifts a week. that doesn’t even come close to making it on my own. I am so frustrated and blessed that I have someone to help me but just dumbfounded that they couldn’t see that my work had decreased and I was slowly getting worse as the years went by but because of my age and that I was able to work a little they considered my not “severe” I feel for those that deserve the disability and cannot obtain the assistance it brings from the government….A silent illness is much worse that a physically just on the bases that it’s harder to receive benefits and takes longer to prove…

  • Barbara Clowers

    Get a disability lawyer. You can find them that get a fixed fee that is taken from you first lump sum disability payment. an experience lawyer can make a huge difference in filling out the paperwork appropriately and filing the inevitable appeal. You may have to quit your job and live on unemployment first…and SSDI is never going to pay you as much as your job.

    I don’t look sick either and now I am 66 I can just pretend I am an inactive senior. I have two disabled daughters and I seem to be the least impaired.

  • Deanna Gibbons

    I was Hit & Ran over by a car in 94. Hit on my Left side Twirled me around and The car Ran Up my entire Body., Including my feet. it took 20 Years to get an MRI. After Numerous X Rays. Just 8 Herniated Disks, Scoliosis, Spinal Stenosis . Sciatica, And Probable MS. Went To a Neurologist & He had told Me That Marker that looked like MS In the MRI Was JUST ANOTHER HERNIATED DISK. So Just a year ago I had been diagnosed with RA. Had Good Pain Management .Great Pharmacy! Pharmacies plays an Important Role Now Days. They have more PULL Than Your Dr.s Apparently. Atleast In NV. And I Moved to Ohio. I was their for a Whole Year. Until I Finally goy into Pain management. He was so scared that He gave me less MEdicine & a Less of a dosage than what I started out with .! I couldn’t even get out of bed with that. Now were back Were As in My Family. Back In NV & Having to start ALL OVER AGAIN!!! Cant use My MRI THAT THAT THEY ALREADY HAVE. Cost me 400 bucks in Deductibles for a Referral to A NEW PAIN MANAGEMENT.AND X RAYS. IT IS ALL ABOUT THE MONEY! I AM WAITING ON MY NEW MANAGEMENT TO CALL & GO DO ANOTHER MRI. AND HOPEING & PRAYING THAT WILL TREAT ME WITH DIGNITY. AND NOT TREAT ME LIKE I AM A JUNKIE!SEEKING PAIN PILLS. I JUST GET SO TIRED OF BEING TREATED LIKE CRAP!!! AND GETTING INJECTION AFTER INJECTIONS THAT DONT HELP. SEEING PHYSICAL THERAPIST,CHIROPRACTORS. PRAYING FOR A DR.THAT KNOWS WHAT HE IS DOING!!! TIRED OF BEING TREATED LIKE THEIR IS NOTHING WRONG WITH ME!!! I FEEL LIKE I HAVE BEEN SPEAKING IN A FOREIGN LANGUAGE THAT NOBODY UNDERSTANDS.!! THAT IS ALL I HAVE TO SAY FOR NOW. THANKS FOR BEING HERE.SO I CAN VENT. UNLESS YOU HAVE PAIN, NO ONE CAN UNDERSTAND WHAT YOU ARE GOING THRU.

  • I am a physically disabled man, a former athlete that at 40 started on a road of disintegration of the body, with extensive bilateral joint hip replacement and two femoral posts [same time], degenerative arthritis, a sensory and motor neuropathy that is so painful I am tempted to cut my legs off below the knees. I also need extensive lower back surgery, and have a hereditary liver disease called Hemochromatosis.
    I qualified for disability on the first try, without an attorney. I can now barely walk at times, but I am content with my life. Our family barely holds on financially. I am a college grad from a major university and was on the way up in my career. Things happen for sure.
    I feel your pain, and live with someone close to me that suffers with similar stuff. She works all day, comes home at night and sleeps. She sleeps on weekends. We could, but have not been intimate in years.
    The facts speak for themselves, but I was an athlete, and doctors and friends would say “Well, you look okay to me?” Great! It causes one in chronic pain to isolate themselves, because friends, though they may love you, are ignorant of what you Stephanie are going through.
    I have met some people on disability that are fine. They are on it due to “Stress” or “Asthma.” There are so many on disability that shouldn’t be it’s not even funny.
    Find a doctor that is sympathetic and empathetic to your illnesses. Right now you are a walking disabled person that should be off work an extended period of time to treat yourself to a better life than you have.
    I have tremendous compassion for you, and pray you will stay the course.
    Thomas

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