It feels like a strange thing to celebrate. Regardless, I write today with the good news that finally, my personal disability insurance has come through! 🎉🎉
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There are many reasons to celebrate this. After struggling with Long COVID symptoms for two years, I'm unable to work. In the course of my body breaking down from trying to work and failing I've also experienced significant income losses from my private physical therapy practice. When my husband and I found out that my income stream was (partially) coming back due to my personal disability claims getting approved, we cried with relief.
Another reason to celebrate is it is exceedingly difficult to prove disability from Long COVID, and in my case I needed to prove total disability. Whether it is private insurance or SSDI, there really aren't standard measures out there for determining the level of disability incurred from Long COVID. It's just such a new condition; there is not enough data out there. Because of this, the burden of proving your claim is on the person applying -- a very overwhelming prospect for someone already likely struggling with brain fog and/or cognitive decline and/or utter exhaustion.
So, with gladness and celebration, I share with you that my claim was approved! And I will continue to be covered for five years if I need it. If I unfortunately am still not able to return to work, I have a Social Security Disability application in the works with the help of a lawyer. To know that I can focus on healing now, without the constant stress of growing debt, is an incredible gift. I'd like for as many people as possible to experience the success I did. Here is my advice on steps to take to prove your claim.
1) Talk to trusted coworkers, HR reps, friends, and loved ones about your abilities. Ask them to reflect back their thoughts on what you are capable of doing in daily work. This is especially helpful if you are like me and push wayyyyy too hard. My husband knew I needed to stop working about six months before I was even willing to think about the possibility. I also had a heart to heart with a friend and coworker, who witnessed firsthand my decline in my abilities (when I thought I was hiding it well), and gave me the tough message that I needed to pull back from my job responsibilities. Your HR department at your job is a confidential place where they can help you if you think you may be disabled but are uncertain.
2) Seek out an occupational therapist. An occupational therapist will help you figure out your level of disability as well as the amount of assistance you may need to continue working or performing activities of daily living. My OT, who specializes in Long COVID, was one of the first providers who really made me realize the problems I was having, and empowered me to stop punishing myself for it.
3) Document, document, document. Let your providers know that you are considering disability, and be clear in telling them about the difficulties you are having at home. That way they can get it on record in your medical documentation. Make sure you are checking in with a provider (therapist or primary care) monthly via an appointment or via MyChart so you have your progress/plateau/decline documented as well. My private disability insurance dismissed an entire year of my struggles because I was not seeing my providers regularly at that time.
4) Get the appropriate tests and measures done. Your insurance does not care if you have a Long COVID diagnosis. What they do care about, is objective proof of your disabilities. This is maddening for someone with an illness that has no real biomarker, test, known impairment level, or prognosis. There are some things that will help though. Ask for a referral for neurocognitive testing if you are having problems with reasoning, sequencing, or remembering things. If you have dysautonomia (and you probably do, because Long COVID causes Postural Orthostatic Tachycardia Syndrome), get an Active Stand test done by a provider such as a physical or occupational therapist-- here is a link to directions I made, in case they don't know how to do it. The gold standard is a Tilt Table test at the hospital lab, which you can also do. However the wait is long and because it is done in a stressful hospital setting can have false negatives. If you have sleep problems -- get a sleep study done. Yes, Long COVID causes sleep disorders.
5) Above all, the most important step you can take is to get a disability evaluation from your local occupational or physical therapy department. It actually took me quite a while to find this option here in Madison. At first the only resource available to me was a Functional Capacity Evaluation, which is a standardized work readiness assessment. It doesn't really assess symptoms common to people with Long COVID, so not the best fit. It also is not covered by insurance -- only workman's compensation if you had a workplace injury. That means potentially thousands of dollars out of your pocket for an evaluation that may not even be assessing what you need. Because this was the only exam that my providers knew of though -- I was willing to go for it -- until I received a phone call from Unity Point Meriter Physical Therapy department, who has an insurance-covered disability evaluation service! I got in within a week, and gave the assessing therapist a heads up about my symptoms. She in turn researched Long COVID and tested me for two days with functional outcome measures specific to my symptoms. Within two weeks of this evaluation -- my disability application was approved! If you do not live in Madison, call and talk personally to the schedulers at your area clinics. Tell them exactly what you are looking for, and you may find the same service in your area.
6) Consider a lawyer. I did not have representation for my private disability claim, but after the months of work that took I was eager to enlist help for my Social Security Disability Insurance application for federal support. I am currently working with Social Security Advocates of Wisconsin, who I highly recommend. If you hire an SSDI lawyer, they know the legal system and navigate the hoops for you during what can be a 1-2 year process. You do not have to pay them up front -- they take a percentage of your first year of approved disability, up to a $7,000 cap.
7) Practice, practice, practice self compassion. It's a hard ask to advocate for monetary support when most of society is encouraging you to "get back out there." It's hard to believe you have a disability when, well, sometimes you do feel okay - however short-lived. Remember that you have just as much value on this earth as any other human. You deserve to have your needs met. And if you've given up a hard-worked-for dream, like a degree or an investment... you deserve compensation for that work. If it's hard for you to remember this, gather a close circle of friends or family and ask them to remind you, often.
8) Disability is not forever. I had this random fear in the process that once I claimed disability, privately or federally, it would be a permanent status limiting me from future choices. This is simply not true. If at some point in my life I am able to return to work, I can withdraw my claim. Federal disability (and some personal disability plans) also allow you to work while receiving funds, which helps you to test the waters of your abilities without the risk of losing the support you need.
Thank you, as always, for reading. If you don't have Long COVID please share this with a friend you think is struggling -- many of us with Long COVID struggle in silence for months and years, with multiple visits to the hospital due to exhaustion -- until we find the right advice and support. If this post helps even one person -- it is so worth it.
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