Today was my big meeting with the lawyer for my social security disability case and honestly, I’m still trying to process it.
Long story short: my mother-in-law was completely wrong in saying they were only denying me because I was under 55 and had a degree and that I was guaranteed to get disability if I got a lawyer and was persistent enough. Also, I am going to have to get a lot more medical care in order to win my case.
The point about my MIL is that she was just wrong, period. Not everyone gets approved for disability eventually, just by being persistent enough and hiring a lawyer. The attorney I met with was very thorough and pointed out other cases where people had very definite, provable, debilitating health conditions, who still lost their disability appeals because they didn’t have the right proof in their medical records.
The other point is that I’ve essentially been shooting myself in the foot when it comes to disability. I haven’t been seeing specialists often enough to have significant documentation, which I didn’t do because I couldn’t afford it with my bad insurance.
The other problem is something that the lawyer says is very common: when I go to the doctor, I downplay my problems. I don’t complain enough and try to put a positive spin on how I’m doing.
According to the lawyer, many people do this and this is what loses disability cases. Doctors record everything you tell them when you go in for a visit. So if you tell them you’re doing better, that’s what they put in your records. If you tell them you’re extremely tired but you still manage to fight through it, that goes in the records too. So then when you try to get disability and say you can’t work, they have your own words against you in your medical records: you’re sick but you’re getting better. It’s tough but you’re doing fine.
Call it a case of the classically American stiff upper lip ethos. Suck it up and don’t complain. Try to look on the bright side. For God’s sake, don’t be a whiner. Nobody likes a complainer. (It also explains why my MIL likely had an easier time getting disability, because she tends to over-exaggerate her health conditions for dramatic effect. Her records probably had plenty of complaining, even though she was and is much more functional than I am.)
Add to that the fact that I tend to be a people pleaser and to put my needs last and that I feel bad about hurting a doctor’s feelings by telling them what they prescribed last time didn’t help me, and it’s clear why my case looks the way it does.
I mean, if they got the records from my occupational and physical therapy after my last relapse, that would also work against me. I was adamant that I was well enough after a month and didn’t need any more therapy. I could take it from there, thank you very much (now get out of my house and stop bugging me 3 days a week.)
So now to win my case, I have to see doctors a lot more often. I need to keep a log of my symptoms, like when I lose my balance and my sight goes fuzzy and I need my husband’s help for things that used to be easy for me, like baking. And I need to tell all those things to the doctors. I also need to start seeing a therapist so they can have those records as well.
On top of all that, I also have to pay for a neuropsychological evaluation to assess the extent of my cognitive difficulties. It’s not the kind of thing insurance covers and I have to pay for it myself out of pocket. It may be as much as $1200, the exact amount of which I won’t know until I make the appointment. It’s an 8-hour exam and this guy can assess what he believes my baseline cognitive function was at its peak to contrast with how it is now. And I have to get it by the end of the month because the guy is retiring then.
He doesn’t try to get specific results — if he finds that I’m fine or only minimally impaired, he’ll say so. But the exam is one of those things where the absence of it will hurt my case if I don’t have it done. Depending on what he finds, the results of it could be significant enough to win the case in itself. So it’s really not optional.
But here’s the thing: I also had to confront today that we’re really not doing that well financially now that I’m not working. I was definitely in denial about that. The lawyer found that income-wise, we qualify for both the county public health plan and county mental health services. I mean, it’s close and it’s somewhat iffy because our 21-year-old lives with us and his income may push us above the limit. So it’s not guaranteed for sure that we’ll get it.
At the same time, knowing that we could have been on the county health plan for this past year would have saved us the $500 a month or so for my husband’s premiums, plus we would have had access to more health care. When my middle son needed an emergency abdominal CT scan, the county health plan would’ve covered it for $100 bucks. Instead, it was $1,400 that we had to pay out of pocket with our private insurance (much of which became debt that we’re still struggling to pay.). I would have been able to get MRIs for $100, instead of skipping them altogether because I didn’t have the $1,000 to do it out of pocket.
But still, mixed in with all this is both shame and embarrassment, and I’m trying to process that. You have to be below 250% of the federal poverty line to qualify for the county health plan and I thought we were doing better than that. While we have a nice house to live in – by far the nicest place we’ve ever lived – it’s still on the low end of rent prices for 4-bedroom houses here. (Honestly, it’s cheaper than 3-bedroom apartments, too.)
We’re not living large and it doesn’t feel like we are. But I normally feel like we’re doing so much better than we were in Michigan. Even if we don’t do a lot of things many other people do around here — we rarely go out to eat and a day at Six Flags or even taking the family to the movies is a stretch on our budget — it doesn’t usually feel like I’m going without a lot.
Yet the numbers don’t lie. Being 250% of the federal poverty level and qualifying for the county health plan doesn’t say we’re doing all that well. I have such negative stigma attached to the county hospital. I tend to think of the people who go there as the homeless, immigrants, people who work in fast food or janitorial work, young single moms–not that those are people of lesser worth or value, but whose circumstances leave them without access to middle-class healthcare.
It doesn’t seem like what a married family with two college-educated parents should have to do. But here we are anyway. We are not middle class.
But it’s clearer why it was so hard for us to afford for me to go to the doctor and get the medical care I needed. Of course I didn’t have money to pay $20K in maximum out of pocket healthcare costs with our employer-provided insurance. Of course I couldn’t afford to see a private therapist. The assumption behind the high-deductible healthcare seems to be that 1) you won’t use it and 2) you have two full-time incomes.
So for that reason, I’m grateful the public option is available and I’m hoping we actually qualify despite my son’s income. But it means that I’m going to be dealing with a notoriously slow and bogged-down health system, which will further add to my stress. I’m overwhelmed just thinking about it.
It also means that if I really want disability, I’m going to have to fight for it. The lawyer said I have to be willing to make up to 8 phone calls a day, harassing people at doctor’s offices to get referrals and tests and other things I need which may not be easy to get. And honestly, knowing I’ll have to fight that much makes me want to give up. I feel defeated already.
I’m asking myself if I really need disability after all. Do I really want to be fighting and dealing with a lot of frustration? Couldn’t I just work full-time once the kids are out of school? By the time I go before an administrative law judge, my youngest will be nearly out of high school anyway. By then, there will be no more need to transport the kids back and forth. I know I can’t work full-time first shift because I don’t get enough sleep and that negatively affects my health, but I’m telling myself maybe I could work full-time second shift somewhere.
I’m also falling back into other forms of magical thinking and denial. Like maybe if I stopped taking all my meds, ate a really good diet, did some moderate exercise every day, I wouldn’t have these symptoms anymore and I could work just fine.
Because the alternative to not being in denial and continuing to pursue disability means I have to fight for it, a lot. I have to come up with money for this neuropsychologist exam. I’m probably not going to be able to continue saying no to treatments that scare me, like the Ocrevus.
Worse yet, I’m afraid that they’ll put me on less effective meds that other neurologists have said are unlikely to work for me, like Copaxone. I’ll have to deal with the scary known side effects like skin necrosis and heart attack symptoms (but not actual heart attacks) when I hit a vein etc. If I’m on a public health plan, will they still try the new drugs before making me try the other ones first? Probably not. Will I have to take more antidepressants that I’ve tried before and didn’t work for me if I’m seeing public mental health? I would assume yes.
It seems like it would hurt my case if I just keep saying no to various meds, but I don’t know if I’m just catastrophizing. Going the public health route feels like I’ll have to give up my freedom and autonomy to make decisions. If I want the government bucks for disability, I can’t opt out of everything the mainstream tells me to do for both MS and depression, regardless of my reasons.
On the other hand, though, if I continue to pursue disability, it means I can’t opt out of taking care of my health the way I have been. I’ve been doing so largely because of lack of money.
If I’m totally honest, if I had enough money to do the IVIG treatment my old neurologist wanted, followed by Ocrevus, with MRIs every four months, I probably would have done it. My opting out was because I felt the treatments were risky and I didn’t have enough money to safely pursue that route. I didn’t want to bankrupt my family over my healthcare. It seemed better for everyone if I just opted out and saved the money, because we definitely couldn’t afford it on our income.
But maybe the public option will make it possible. I’ll have to see what happens if I do the things they think will help me. Even if it’s not Ocrevus and it’s instead terrifying self-injections and I’ll be sicker and have scary side effects, maybe being forced to “take care of myself” will be good for me. Maybe it won’t be as bad as I fear it will. Maybe it won’t negatively impact the family further to have to get this test out of pocket.
I just really wish that I could work full-time, that I wasn’t sick, that we weren’t still low-income even after moving here. I am very tired of still not being middle class, which I know is all my fault. If I were working full-time, we would be middle class. That was the whole point of moving back here and we failed because of me.
The lawyer said winning the case is largely up to me doing the right things. But I just want to lay down and give up. I honestly really don’t want disability that badly. I want to work, dammit.