‘Disabled? You Seem Perfectly Fine to Me!’
The casual remark, “You seem perfectly fine to me!” bothers me (and others) because eligibility for Social Security Disability benefits requires proving we are not fine. In fact, we must prove that we are disabled, which is no small burden when we “seem perfectly fine.”
‘Looking’ disabled
An acquaintance of mine recently remarked, “You seem perfectly fine to me.” When I reviewed all the things wrong with me at that very moment (a lot), I struggled with how to respond. There was not enough time in the world to fully explain what living with MS means. To top it off, MS is not my only health issue. (I also have Sjögren’s, chronic bronchitis, and arthritis, to name a few.)
Although we may look fine, we know we are not. We often go out of our way to make sure we don’t look as miserable as we might feel. Weakness in America, in particular, is despised. Many people with MS and other disabilities may be able to do certain tasks such as walk or work, but it is possible that they are struggling as well. Not all chronic illnesses and disabilities are visible.
Why ‘you seem fine’ can be offensive to people with disabilities
This time I reflected on why “You seem perfectly fine” represents a very real problem for people with MS and other chronic illnesses. Becoming officially disabled is not a one-and-done process. People with disabilities like MS must prove our ongoing disabled status. MS is a Listed Condition for Social Security eligibility. This does not mean that “just” having MS qualifies for Social Security Disability Insurance benefits.
The validity of our status as officially disabled means life or death for us because we can’t work. It devastated me when I could no longer work. We are not shirkers, lazy, scamming the system, or any of the other negative assumptions about people on disability.
A reviewer of our disability status might also decide that we “seem too good to be disabled” and cut off our income (aka benefits) if kindly acquaintances perceive us as “perfectly fine.”
Medicare
Being judged “perfectly fine” endangers more than “just” my income for food, shelter, and everything else. Losing my disabled status would mean I am no longer eligible for Medicare. Without Medicare, I would no longer able to afford medical care. I won’t even comment on health insurance at this point.
I pay $$$ for the supplemental 20% gap coverage (Medicare only pays 80%). Plus, I buy extra coverage for all of the deductibles and copays. I can budget for that; I can’t budget for the random hospitalization for an exacerbation.
Medicare Part D for medications means disease-modifying therapy for people with MS. DMT stands between stable MS and potential disastrously deterioration from unchecked MS disease activity.
We need a change of assumptions
We must somehow change this belief that disabled people must look sick. Cognitive issues are invisible disabilities and are devastating all the same.
I wish I could say, “Tell people you have MS,” to maybe help change minds about what MS disability really means. I can’t. Someone you tell is certain to respond with disbelief because, “You seem perfectly fine.”
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Comments
Catherine
Hi Paula,
I know exactly what you mean! Whenever I meet with friends or family who I haven’t seen in a while, they always look at me surprised and say how well I look. Well yes, but that’s because I have made an effort with my appearance (for my own self-esteem if nothing else) knowing I would be seeing them and also, it may just be one of my rare ‘good days’. They don’t see me struggling to get out of bed in the morning or count how many pills I have to take through-out the day. My sister-in-law often looks at me suspiciously, as if I have made up the fact that I have MS (rheumatoid arthritis too).
Our transport organisation here in London (Transport for London) have come up with an interesting scheme; it is a badge that one may apply for and it simply states ‘Please offer me a seat’. They realise that many passengers have impairments, conditions or illnesses that are not obvious, this free badge will hopefully help them get a seat if they are struggling to stand: https://tfl.gov.uk/campaign/please-offer-me-a-seat?intcmp=41947
I don’t know the answer to this problem, we certainly can’t go around with badges pinned to our chests all the time!
Best wishes to you,
Catherine
Like all things, badges will be abused and do not carry "proof" that we are disabled. In America nasty people leave notes on car windows about "handicapped parking [foul words]" when they see what appears to be an able-bodied person using the dedicated parking space. Like they are the handicapped police or something. I sure as heck am not going to wear a freaking badge. Here too instead of applauding the "hang tag" for car mirrors to show you have been authorized to use dedicated handicapped parking, the news/discussions all end up discussing how "anybody and their mother" can get a hang tag -- in other words, based on nothing or the "able-bodied" looking-ness of people they have seen, these nasty people all think we are playing the system to get free and special parking privileges. Of course a certain percentage of people all think we who are disabled are faking it anyway: because disability means you must look sick, sad, limp, or have visible impairment. Sigh.
Even our local disabled transit is defective from the outset because they call it "paratransit" as in paraplegic, as if ONLY have a complete inability walk is the only criteria that merits "special" door to door service (required by ADA here). Strict scrutiny and doctor's letter are required to use this EXPENSIVE service and that is $$ after subsidies. In America to be on Social Security Disability Insurance is to be BELOW POVERTY level living. The guidelines even specifically state that you must have VISIBLE PROOF of mobility impairment like a walker or cane (or obviously wheelchair). Sigh. I am really active to change this whole scenario in our town with the overhaul of transit in the works.
Our buses generally have signage on the front seats saying "elderly and disabled priority seating" or similar. The elderly just have to stand there and shame the able-bodied person in the seat because their need is VISIBLE. I do not tolerate anyone sitting there if I need a seat and no others are available. I ask them if they are disabled and if they say "no" I state that I have multiple sclerosis and need to sit down. Peer pressure, shame, and one likes to think decency has always meant the seat is made available to me. One time a woman had a bag of groceries sitting on the seat in the front and after ignoring me standing over her (extremely full bus), I simply told her to move her bag, that I needed the seat because of disability. She was really mad but she did it anyway. I am not sure if the bus driver would have intervened; he might have.
Bummer about the RA too. I have regular arthritis as well as Sjogren's Syndrome. The pain of RA is much worse than regular arthritis I read, and wow regular really hurts! I am so sorry that you have to suffer pettiness of relations who do not understand! It makes me wish for a science fiction world where we could cause a non-believer to experience what we feel for a day! Then see how "good" they manage to look. Grr. Thanks for your comment! The link was a fascinating look at what good things London Transit is trying to do. I loved using the Tube and the buses were great when I have visited London. I read the Tube is very expensive now though.
Tracy Buhler
I to know exactly what this article is speaking about. For years I worked Full Time as an RN. When asked if I was still working, people replied you shouldn't be. Now that I'm collecting disability I get "I'm sure you can still work." "You look fine" I can't win!!
I really struggle some days to look "fine"!!!
People have to be educated on all our internal struggles. These are also when educated people sometimes.
I'm fighting with disability they will only approve this 2-3months at one time. People I'm not going to be cured!! I wish.
I just tell people that I'm retired, it's easier, never use handicapped parking and never complain. I " look fine"
You point out an issue that drives me nuts: "People I'm not going to be cured!!" but the excessive constant need to document just how disabled you are is a pain. Fundamental to this having to fight for disability is the "guilty until proven innocent" philosophy that seems to prevail in matters of disability.
That plus the complete elimination of any right to privacy on anything; sure you can decline, but then kiss any benefits goodbye. Again, it is the belief that you can't really be disabled if you don't "look" or sound dysfunctional.
I suspect that all people with chronic illnesses deal with this phenomena. I was reluctant to be "out" at first because of unknown consequences but now that I am an activist, I make a point of saying so often to anyone remotely nearby. The gentleman who made this remark thought he didn't know anyone with MS. Turns out at least 2 coworkers have family with MS, and last night I met a friend of his who has it but I don't think he knows. We the disabled are EVERYWHERE but people just don't realize it. To reinforce my visibility, I realized that I should take my walker every time I go to any public meetings because that makes my disability visible and may help people become aware that even though I look "fine" clearly, I am not.
The other thing about "looking fine" that becomes a problem for me, I think, is that I have a Master's degree and a lot of work experience and lived all around America. This gives me an edge so that for the time I am able to stay awake, I can SOUND and BE mentally on the ball. The part no one can see is that after say, writing a column, I need to sleep for a few hours, for example. Worse though, is that I cannot remember what I have written a lot of the time! I tell people things that are smart, educated, and insightful but do not remember that I have done so. I mean, a complete blank. It sounds like you too are judged as being able to work because you are "competent" for some sophisticated tasks some of the time. People assume that means you could do that 40 hours a week when *that is just not possible* no matter how we wish it were so.
Sue
What I hate as much as "You look fine to me" is "My friend's wife's sister has MS and she's doing just fine." The implication being that I am exaggerating my illness. If I had cancer, nobody would say, "Well, so-and-so has cancer and she's doing just fine." I had a therapist once who felt that the National MS Society was it's own worst enemy. They keep advertising people living full, active lives while downplaying many people's reality. This diminishes the difficulties many people deal with daily.
As far as the hang tags, my doctor had to fill out a stack of papers before I could get one. Sometimes, the police are just as bad as the law breakers. My father called the police once because someone parked their motorcycle on the handicapped hash marks meant for wheelchair access. The motorcyclist argued that there was still enough space to park. The cop took his side and refused to issue a ticket.
The paratransit in my area will only pick you up at your house if you live within 3/4 of a mile from the bus stop and will only take you along the regular route, which is not long. I can bring one aide, but no one else. That means leaving my 10-year old daughter home.
I think you are right about the paratransit here too, with that distance limitation from the fixed bus routes. To force you on the fixed bus routes instead of door to door most efficiently is both ridiculous and mean unless they are picking up other people on the fixed route. I would even question the legality of that but not being a lawyer, I care about justice, not the letter of the law.
Ditto on the stripes part. In front of the two dedicated handicapped parking spots of our public library the area is actually so big a good driver with a small car can parallel park in it! I am not that good of a driver so I have to wait sometimes to be able to pull out because the striped car is so close to the front of my car.The cop was wrong to not issue a ticket. I would have taken a photo with my cell phone if you have that capacity consider that for the future. I have been documenting the need for more dedicated handicapped parking in front of the library by taking photos every time I am there, even when I score a spot. Plus my City Council member got the library to do a count of availability every hour recently to gather data yo determine need. The funny part was that when I couldn't park there because the two spots were full and the other 3 30-minute spots also were full, I noticed that 2 of the 3 other spots were also cars with hang tags! So a raw count of occupancy really should also review the non-dedicated spots for tags or plates to see how many disabled space eligible went unserved by the two spot limit.
Your point about the other MSer, "she's doing just fine" was excellent! The cancer patient parallel was an apt analogy.
I agree that the NMSS creates something of a dilemma for us. On the one hand, many people can and do want to work and live full active lives and not be pitied or assumed to not be well enough to go on family outings or some such. But I agree that the emphasis of "active" and happy smiling people does perpetuate the "if you only tried harder" or the whole MS Warrior (gag) as if sheer willpower will allow you to walk when your legs collapse.
Many people, I think, are uncomfortable around disabled people even when you look fine, and so have a bit of a struggle to respond. When people tell me they have MS or know someone who has it, I respond, "I'm sorry to hear that." I wish that were the response MSers got, I'm pretty sure cancer gets sympathy. But of course, all diseases are wretched in reality. You have piqued my interest though into looking at how other diseases are portrayed by the various dot orgs. I may do a column on that! Thanks for your comment.
Kris
It's too bad all these articles are/for a read predominantly by people dealing with ms and not the lay public. We know how difficult things are for us, how others simply don't get it. We don't feel good or bad Day to day .. ms is not like a cold. Most of us deal with the same symptoms day in day out! I read these blogs and get so annoyed because they target the wrong audience! Wish my family would read just one of these articles. Tired of explaining why I can't do family things. Doesn't help my mother constantly compares her pains to mine. Want to be left alone !
True, in my case every day there is underlying fatigue that is so much more than "being tired" which is as close as most people can understand. My memory problems cause me to spend considerable time looking for things I have forgotten to put in the usual spot. Or today, trying to fill out an annual renewal for RX assistance, where I put last years with the phone numbers and such of the people to whom I spoke. I know I put the material in that deadly of all places: someplace safe.
The target audience of other MSers helps me because I learn and appreciate what other MSers experience. We have a great MS Support Group in my town that meets once a month and has useful speakers and a chance to ask questions and just chat with other people *who really get it* in ways that others can't ever really understand. I used to feel like I just wanted to be alone, and never thought a "support group" would be something I would like much less appreciate it. Now that I have been going to our local group for gosh, 3 years now, I really value the camaraderie. It is odd to feel so close to complete strangers from a few years ago when I only see them once a month or so, but I do!
I would suggest sending links to articles via email or social media. You can't make them read it, but maybe someone will do so and it might help.
Susan
Today again demands placed on me by others:
"Have people over; it's just lunch; it's no deal" they say.well I cried and acted out in private all day trying with all my might to prepare
The stress is overwhelming
Trying at organization and multitasking which is part of planning everything to be completed by a specific time juggles my brain into confusion and then tears and words of utter frustration. Not to mention the leg spasms and layer upon
layer of fatigue which I will pay for with exhaustion and bedrest and difficulty walking and speaking. Why do I allow myself to get talked into this? Because I look fine!
Stress is not good as I am sure you know. People REALLY don't understand how taxing all the mental activity of planning and organizing and remembering all the details on top of the physical demands as well. A counselor once told me that I needed to do better at "setting boundaries" but it is hard when you want to do things and don't want to face angry people. Or disappoint people, or any of those negative consequences of the cost of admitting we are not "fine" no matter how we look. Maybe counter-offer with alternatives like "fine, come over and bring some take-out with you!" next time. Or if that would be too much of a shock for the people you would like to spend time with, say something casually like, "I think I'll get some deli for snacks." If you do it often enough maybe they'll get a hint and start taking some of the "just lunch" burden by offering to do their share as well. Worth a try maybe? I have reached the point where I point blank say, nope, I am too tired because that's the truth and it is too much to do anything else. But it is hard when people don't understand how bad it can really be.
David Kirschner
Thirty-five years ago MS thoroughly exhausted me, trashed my speech, vision, balance and wastewater disposal system, to mention a few. Not all bodily functions were hit at once. It all took many years, not least of which was one mysterious single incident of excruciating pain. Practically all symptoms faded, leaving me in surprisingly better health. I've become a proponent of exercise, wanting to improve on my very good fortune. I appreciate it all, every moment. Good Luck to everyone.
judy
~ I get all of your comments really, however I feel these types of ignorant remarks speak more of the people making these comments then of those they are intended for....Education education education always rears its ugly head to become an opportunity to be used over and over again..keep on keeping on, maybe the next generation will get it right?lets keep teaching those ignorant people!!!