What is My Worth? An Open Letter to the 2022 Lupus Summit

 

One of the things I struggle most with since being diagnosed has been my sense of value. 

 

I mean, it’s understandable considering the world we live in. We often base it on tangible things like our careers, the things we have, the places we go, the money we make.  So, what happens when suddenly, those core things are taken away and you’re left scrambling to find your identity in a world that you no longer fit into? 

 

God. Thats the million-dollar question, isn’t it? How do we measure value?

 

It looks different for everyone though at the end of the day there is a kind of universally understood line drawn in the sand.  I see it all the time- through social media, advertising, hell- it’s even plastered all over dating apps with things like “I have a house, a car, a career- I expect you to have your shit together as well” written on more profiles than I can count.

 

Even the dictionary has a few very specific descriptions for what it means:

 

As a noun, it is largely looked at as the regard that something is held to deserve; the importance, worth, or usefulness of something.  As a verb it the estimate of the monetary worth of something.

 

Who gets to decide these things for a person? The answer should be that I get to decide what my value is, but it just doesn’t work like that. Instead, we spend our days trying to prove ourselves in one way or another.  We can tell ourselves that our value goes beyond these things, but it is instinct for us to feel that we need prove our worth because… well we’ve been expected to prove our worth over and over again.

 

I have spent the last five years essentially forced to reevaluate what value means to me.  And more importantly, I’ve spent the last five years having to fight to prove my worth to everyone else.  Doctors and other healthcare professionals, insurance companies, potential romantic partners, and now, the great state of TN as I start the disability process.  What have I found through all of this?  That we are a narrow-minded society, who are largely self-involved, and more importantly, that this system is set up to see us fail.

 

I spent weeks working on my disability claim after years of my doctors telling me I needed to be on it, that I needed to be able to work less and focus on myself more.  Years of killing my body and scraping by just to get enough money to consistently see my doctors so that I could get enough medical history to prove that I needed to be on disability.  It has been a wheel I can’t get off but finally there was a light at the end of the tunnel. 

 

I had several solid years of medical records, multiple diagnosis as well as documentation to show I was being tested for even more autoimmune issues, and I finally had doctors who were on my side ready to fight should the state push back.  I knew to expect to be turned down medically the first time, but I also knew I would appeal, and I could see the light at the end of the tunnel.  I had started to slowly plan for what life could look like with a steady income, insurance, and the ability to slow down the number of contracts I took on.

 

I had a budget for a car so I could finally stop sharing with my generous mother.  I started thinking about what life with a new, functional hip would look like.  I even started to wonder what life with the potential of a controlled illness would mean for me with access to money, doctors, and new treatment options. 

 

I began wondering what a quality life might look like.

 

I was so excited, so ready.  Then I found out I didn’t qualify for disability not based on my medical history but based on my income.  An income that was less than $13,000 last year.  

 

Just like that, my value came into question again. 

 

I want off this wheel.  It just keeps spinning and spinning and I am barely keeping up.  It’s exhausting.  I must have money to be able to go to appointments, pay for medications and tests, food, clothing, all the things we are forced to pay for as adults.  Even still, according to the Office of the Assistant Secretary for Planning and Evaluation I qualify under the federal poverty level.  If you were to break my income down by an hourly full-time wage, I would make $6.10/hour.  That is not technically what I make hourly as I am thankfully not working full time, but the fact remains- I am poor.

 

I understand that the state wants a paper trail, they want to ensure that you are who you say you are, that your ailments are as bad as you claim but how is anyone supposed to qualify under these terms especially when you factor in that as a chronically ill woman, I need to be able to pay for doctors, medications, test and as a human being I need to be able to have food and shelter.  You can’t do all of that on $13,000 a year yet that is exactly what the state expects in order to even be considered a candidate for disability.

 

That is mind blowing to me. This isn’t about my illness, or documentation from dozens of medical professionals that will back up all their notes stating that I do not need to be working or I will continue to get worse.  Once again, my value has come down to something it shouldn’t- a salary.  A very pitiful one at that.

 

No attorney will touch my case.  I have spoken to multiple firms, the best advice they gave me was take on less contracts, take less money.

 

I am worth too much for the government to want to intervene, I don’t have enough worth for someone to want to even consider getting to know me or seriously date me, or for anyone to consider extending me credit. I wouldn’t survive without the love of a family who allows me to live with them so I can put what little funds I get towards more important things, like life saving medications.  Without the assistance of Church Health, I couldn’t even get medical professionals to take on my case without paying in full- up front.  Even in the hospital, while lying in a bed unable to walk because I broke my hip in THREE places, I was told there is no way any physician would consider doing the surgery immediately because I was uninsured.  I have gone more than 2 years with a broken hip because of this.

 

Value.  Worth.  Desirability.

 

I am constantly having to fight to be seen.  Should my value and worth be based on the fact that I am a living, breathing human being? Yes, it should.  Is that how it works?  No, not at all.

 

This is not just something I experience.  I cannot tell you how many people I know in the chronic community that have this very same struggle. This is a pandemic but its not one anyone wants to think about because it isn’t their problem.  That’s the thing though, chronic illness isn’t your problem until it is.

 

I was a 30-year-old woman with an amazing career and life.  I will be 36 in a little over a month and I am in a vastly different place than I was 5 years ago.  It wasn’t expected, I didn’t do anything to bring this on, nor do I deserve it. 

 

Point being, it could happen to anyone. 

 

I promised as I began this year’s Lupus Awareness Month that I would be candid so here I am.  It is a messy disease, but you know what is even messier?  The state of our government and the people who make big decisions for our country without having any real understanding of what goes into things like health insurance, medical treatments, diagnosis, and what it is even like to LIVE as a person with a chronic and debilitating illness.

 

I shouldn’t have to prove my worth to be given the chance to live.  Yet here we are, another year and that is exactly what I am doing.

 

Value.  What is my value?