It’s crazy how quickly life can change, making what you used to take for granted as your regular everyday routine, feel as foreign as another lifetime. I stopped working back in December 2018 – a full eight months ago. Life, before I got sick, feels so far away, like I never even had a healthy body. Life, before I stopped working from being sick, feels like just yesterday, but also like an eternity ago at the same time. I guess the dichotomy of that makes sense if I really think about it. The past eight months, I’ve had a constant internal struggle between accepting where I am in life, trying to focus on moving forward, and getting stuck with one foot in my past life, not wanting to let go of what used to be.
I think one of the most significant contributors to feeling stuck was the process of applying for long-term disability. LTD isn’t something I talked about publically a lot. I was afraid it would negatively affect my claim. But it was a massive part of my life — honestly, the most time-consuming part of my life these past eight months. Applying for LTD took up the time, energy, and brain space that work used to hold for me. It’s pretty ironic (and ridiculously annoying) that applying for LTD becomes a full-time job. At least when I had a job, I got praise for doing work, with LTD I just encountered people who looked for any reason not to believe me and call me psycho-somatic; because that’s productive.
The purpose of taking time off from working was so I could spend more time focusing on my health. Working full-time and treating my chronic illness wasn’t a cute look on me. I was trying to be 110% committed to my job, 110% committed to my health, with 50% of my energy and brainpower. And as we all can see, those numbers don’t add up. So I stopped working, applied for LTD and waited, and waited, and waited some more. All this waiting meant I didn’t have the money to fight my illnesses as hard as I wanted, it meant extra stress on my unhealthy body as I fought to prove to people who didn’t even know me that I was sick, and it meant my life I had put on hold to get better was feeling farther and farther away. On top of this, I was still living in a house where our ceiling collapsed from a water heater leak causing the house to be full of mold while we waited for insurance to approve for us to move out, making all the meds I was taking null and void, my mom had major surgery to remove a cantaloupe-sized fibroid that put her out of commission for 6 weeks, and my older sister was diagnosed with breast cancer and had a double mastectomy. So yeah, we had a little bit going on in the Schutze fam.
Needless to say, my plan of moving home with my mom, getting LTD so I could focus on my health wasn’t working out as smoothly as I had hoped. These past couple months have been some of the hardest in my life; trying to stay positive despite what felt like the world crashing down around me was sometimes impossible. And after waiting seven months for LTD to decide on my claim, I finally received my answer about a month ago: I was denied. This was absolutely heartbreaking. For those of you who have a chronic illness, specifically Lyme or a tick-borne, you understand exactly where my head went. I was in a complete panic on how I was going to afford to keep living, let alone get better. I was mentally adding up all my expenses in my head: the doctor’s bills (not covered by insurance), the supplements (not covered by insurance), the prescriptions, the lab work (not covered by insurance), the health insurance, the costly clean food I had to eat – it didn’t seem feasible. Being chronically sick is so expensive, and for many people, their sickness is what financially keeps them from being able to afford to get better. How screwed up is that?
What made this even harder for me to handle was why LTD denied me. They stated because I have a blog and go to coffee shops some times, I should be able to do my full-time job. You tell me if that computes in your head? I’ll wait.
Yeah, no that’s ridiculous.
Let’s not forget that my job was part of the reason I was so sick and struggled to get better. And for the first two+ months of not working, I was bed-ridden, spending 98% of my time in my bed sleeping or laying there feeling miserable as the years of pushing my body past its limits finally caught up with me. And yes, now after eight months of being home, resting, removing a lot of stressors from my life, I was thankfully getting enough energy to leave my bed some days, and go sit at a coffee shop surrounded by people instead of in my childhood bedroom all alone all day starring at the walls wishing they were people.
And I will say, I don’t take this improvement for granted. I feel very lucky that even despite being unable to afford to hit my illness at all angles, and still living in an environment with mold, my body has made improvements that have helped my quality of life. But being able to function 50% of the time instead of 2% of the time is still not enough to do a 60+ hours a week job. And my whole purpose of getting LTD was to take a year off of work to focus on my health so I could get my life back. I don’t want to be sick forever. Who at 29 years old, wants to be sick, living at home with their mom, as they watch their friends lives and careers continue as they live their life in the limbo that is a chronic illness? Pshh, not this girl.
So here I was outraged, hurt, and fearful of what the future would hold. I couldn’t believe the reasons they listed for my denial, so I immediately started researching LTD lawyers. I was going to appeal; I was going to stick it to the man and not let the spinless, money-driven, insurance company beat me. I mean, I paid for this insurance for goodness sakes. Plus, I felt like I had no choice. I was out of money, out of options, and completely out of spoons. So hyped up on adrenaline I called a handful of law firms, spoke with some lawyers, read their contracts, sent them my denial letter, and did extensive research on appealing. Within a couple of days, I went from being 150% sure I was going to appeal, to having a knot in my stomach and questioning if this was the right path for me. And so this rollercoaster of craziness and uncertainty continued.
I had lawyers tell me they wouldn’t take my case because they didn’t think I could win, while others said it would take a lot of time and money for me to win, and it most likely wouldn’t be in an appeal, but in a lawsuit, because I’m so young. A lawsuit? I wasn’t trying to have a suit that could cost me tens of thousands of dollars and years of my life. Yes, I said years. From the research I did and many people in the chronic illness community I spoke to, it can take an average of 3-5 years to win a suit against an LTD company, and that’s even if you win. I wasn’t sure I wanted to sign the next 3-5 years of my life away to a potential lawsuit at 29 years old. That would mean I wouldn’t be able to work for another 3-5 years or see any money until then either.
So as much as I wanted to stick it to the man, it didn’t seem like the best option or me. Leaving me feeling paralyzed, and not sure what move to make next, was there even another move to make? For so long, I thought that LTD was my only option, both financially and physically, to afford my body the time it needed to heal. This final realization that LTD wasn’t going to be the saving grace I was counting on was a heavy blow. It sent me into a dark place I had been fighting to avoid visiting for a long time. That place where you let yourself lose hope, and you don’t see any way out. Not to say there wasn’t a way out, but there was no way I was going to be capable of seeing it while I was in this state of mind.
I was camping out in doom and gloom; I made a nice little cozy spot for myself where I could be mad at the world, pout about where I was in life, tell myself it wasn’t fair, and let the heaviness of everything going on in life consume me. I haven’t shied away from sharing that my illnesses have caused me to struggle with anxiety and depression, and sadly, I know this isn’t uncommon for people with chronic disease. I’m sure more than one of you reading this right now have had similar thoughts, and I hate that. I hate that our medical system has failed us, I hate the illness is so expensive, so isolating, and that we can be left feeling incapable of escaping it all.
But sometimes we need to hit our rock bottom to realize there is still a light shining above us. The dark place I was renting space in was a turning point for me because after spending some time there, I realized I didn’t like it. I had hit a fork in the road: I could either give up and let my story be one of a girl conquered by her illness, or find the strength to keep pushing and take my power back. So I took that last little bit of hope I had left deep down in my reserves and decided to keep fighting.
It took everything I had to change my mindset, to tell myself it was all going to work out, even if I couldn’t see how. And then, slowly, things started to shift. Insurance agreed to pay to move me out of my house and put me up in a hotel in downtown Dallas for a month, so I was finally out of a moldy environment. Within a week or so, my mind started to feel clearer, and I had mental energy I haven’t had in a long time. Having a space of my own gave me a sense of independence that I missed a lot and made me more confident in myself. I still didn’t know what the heck I was going to do about LTD, but the heaviness of it wasn’t feeling as heavy. Giving myself the grace to believe it would all work out made such a difference in how I was viewing the world.
And then something happened: Fibroid Awareness Month. Back in early June, a friend of mine reached out to me to help her company with a campaign for Fibroid Awareness Month. She had seen my campaign for Lyme Disease Awareness Month and wanted to do something similar. I helped her, and her team, build out their campaign and really enjoyed it. We joked about how great it would be for me to come work for her in Austin and how dumb Lyme was for being in the way. At the time that was all I thought of the conversation, a “yeah wouldn’t that be great in another lifetime”. I think this is a trap many of us with chronic illness can fall into. We get stuck in an all or nothing mindset because much of our lives are structured that way. But with this newfound energy and a desire to take my power back, the way I was thinking started to shift.
I knew I couldn’t do a full-time job right now, that was not in the cards for me. I needed to continue to focus on my health as my top priority, but what if I could work part-time from home? Make some money to pay for my treatments and massive medical bills (again thanks health care system for that). When I first stopped working, I knew part-time work wasn’t an option for me, I had discussed it with my doctors, and it was clear I needed to stop working altogether. But here I was eight months later, I had made some improvements with my health, and was finally out of a moldy environment. So I decided to believe in myself and make a move. I reached out to my friend and asked her about the potential of doing some part-time consulting work for her. I had no idea if this was going to be an option she would be interested in, but I knew I had to try.
Here I am a couple of weeks later officially employed part-time. YOUR GIRL GOT A JOB, Y’ALL. And it’s a perfect fit for where I am in life right now. I will be helping market a much needed surgical alternative for women with fibroids and doing patient advocacy work. And I can do it from home, in my bed. I mean, what a fit.
Two months ago, I wouldn’t have been able to fathom working, let alone having the confidence to reach out and ask for a job that perfectly fit my needs. I believe timing is essential, but even more important is believing that everything will work out, even in your darkest moments when you can’t see how. Life is messy and hard, and when you are chronically sick, it’s even more so. But we can’t forget that there are ebbs and flows in life, and when we are down we have to remember in time, we will be back up. So here’s to a new life routine, one that always remembers, we can be sick and still make power moves.