My last post talked about my 14-year process of getting my diagnoses. As devastating as it was to learn of my conditions, I was relieved to finally have answers. I believed that since my doctors finally knew what I was dealing with, I would quickly have a treatment plan that would help me feel better and get back to a “normal” life. It never occurred to me that getting the diagnoses would simply be the beginning of a long road ahead of me. I never imagined what was to come: multiple failed treatment attempts, further deterioration of my health, and then being forced to give up my livelihood in order to save my life.
Up until this point, my health had minimal effects on my job performance. But that started to change. Having conditions that affect most of my body require regularly seeing multiple specialists. I often had to leave work early or come in late because of this. My tumor gave me a constant headache that no medicine could take away. My lupus was unstable, so I was always in severe joint pain and often running a fever. My sleep disorder caused me to feel incredibly drugged when trying to wake up in the mornings. It was physically hard to get up and reach a point when I was coherent enough to get behind a wheel and safely drive to work. I was often late to work because of this. I had relentless and unbearable brain fog and fatigue. Customers would pick up on my exhaustion over the phone and make rude comments to me about it. It was embarrassing, and I had no control over it. I could not fake energy. At times, my brain fog was so bad that people would be speaking to me in English, and it was as if they were speaking in a foreign language because I could not understand what they were saying. That would terrify me because I knew that I should be able to understand them. Whenever a coworker would come to work with “just a cold,” I would catch it, end up in the hospital because my immune system was compromised, and miss multiple days of work. My health was getting worse and worse, and my doctors were struggling to find treatments that would help me. Everything I would be prescribed would give me one of those severe side effects from the list of reactions that require you to stop use immediately. It would take everything I had to drag myself through the workday, and then I would get home and crash. I would only be awake for a handful of hours on the weekends because working was too much for my body. I didn’t know how much longer I could keep that up, and it terrified me.
As my health deteriorated, I started to miss work more frequently. I pushed as hard as I could, but there were days when no amount of willpower could get me to work. I was terrified that I would lose my job for it. One day, my fears started to become a reality. HR pulled me into a meeting one morning. They told me the company was concerned for my well-being, handed me paperwork for short-term disability insurance, and told me I should strongly consider going on a 3-month medical leave to get my health under control. She then explained that since the company was small, they were not legally obligated to honor FMLA. Since I had short-term disability insurance, I could receive part of my paycheck while on leave, but the company had no legal obligation to hold a job for me. The fact that they made it a point to mention that loophole to me told me I would lose my job if I went on medical leave. They gave me two options: 1) Don’t take leave but would lose my job if I missed another or was late because my health was beyond my control. 2) Go on medical leave so they could put a healthy person in my seat (their words exactly). There was no winning. I was gutted. I had been with the company for almost 2 years, yet my company would rather get rid of me than try to work with me.
Since there was no way I would keep my job, I decided to apply for short-term disability. My doctor reviewed all my recent labs and tests. He then explained to me that I could not keep going the way I was going if I wanted to live. My body was in worse shape than I realized, and it was too weak to keep dragging it through work. My doctor declared me disabled, signed the papers to give me a 3-month medical leave, and put restrictions on pretty much everything in my life. I was literally dying, and all I could think about was how would I survive financially if I couldn’t work. I was only 26. My career had barely begun. I had just under two months of income saved, and disability income would only be 60% of my paycheck. What if three months were not enough time to find a treatment that would work for me? How would I pay my bills then if I still could not work?
I had about a week left of work after I submitted my disability paperwork. One thing that I was proud of was that when I left, not a single task was left undone. Despite my sickness, absences, and frequent doctor appointments, I always got my job done. My coworkers threw me a get-well-soon/going away party on my last day. I was terrified because I had no idea what came next. Little did I know that what I thought would be a 3-month medical leave would end up being for 13 months. Part of me was naïve then in that I believed my time off would be a time to rest and recuperate. In reality, it would be the hardest physical, mental, and spiritual battle of my life.
Stay tuned for my next post, where I will talk about my 13-month medical leave.
23 COMMENTS
Debbie
3 years agoThis is one challenging journey! Looking forward to learning how this all unfolds. Wishing you the best!
Amy Martinez
3 years ago AUTHORThank you!
Tiffany
3 years agoIt is so hard to have to choose between health and finance. Here’s hoping there are better options for the future! I wish you well on your health journey 💕
Amy Martinez
3 years ago AUTHORHonestly, dealing with the finances has been the hardest part of my journey. It is hard enough dealing with the sickness. Constantly dealing with insurance, medical bills, etc. makes it so much harder.
Marianne
3 years agoWow… that is a difficult road to travel. But it just goes to show, you need to take care of yourself first and foremost. Work will just replace you, so that is not a good place to put your loyalties.
Amy Martinez
3 years ago AUTHORI agree. Health does come first.
Sabrina
3 years agoMy heart goes out to you. You are so strong to be able to go on but your health is most important. No job in the world is worth dying for. Business decisions are so heartless we are worth so much more. I am praying for you and your journey. I cannot wait to hear about the rest of your journey.
Amy Martinez
3 years ago AUTHORThank you for the prayers and encouragement.
Cecile Leger
3 years agoSending positive vibes your way. Take care of yourself. Can’t wait to hear part 2. XO
Amy Martinez
3 years ago AUTHORThank you!
Kadi
3 years agoWishing you all of the best on your health journey. Looking forward to hearing part 2!
Amy Martinez
3 years ago AUTHORThank you!
Alicia
3 years agoWow, this is so hard! I have been in a similar situation but was very grateful to have just gotten married to a wonderful man encouraging me to quit and put health first. Finances were still a concern but much less! Eager to hear more of your story!
Amy Martinez
3 years ago AUTHORI am sorry that you have been in similar circumstances, but I am glad you have a supportive husband. Hopefully, I will also be married to a supportive husband.
Terra Booth
3 years agoThis must be incredibly difficult to deal with at such a young age. I know first hand that companies often won’t support the leaves and missing work regardless of the reason despite outward appearances. It must take a lot of courage to write about how difficult it has been and the difficult decision you faced.
Amy Martinez
3 years ago AUTHORThank you. A large part of my struggle is that I deal with a lot of things most people don’t go through at an age when people tend to have abundant health and energy.
Chelsea
3 years agoWow. I can’t imagine going through this at 26. We actually just got disability insurance because we found out we didn’t have it. So now we’re paying into it each month. I look forward to hearing the rest of your story in your next post.
Amy Martinez
3 years ago AUTHORThank you. I always tell everyone to get disability insurance if their job provides it. You never know what will happen, and it helps to have some financial security in the event of an unforseen illness, accident, surgery, etc.
Sabrina DeWalt
3 years agoWow. They really didn’t give you much of a choice.
Amy Martinez
3 years ago AUTHORIt is heartbreaking to know how commonplace it is for companies to dismiss people in their times of hardship.
Cindy Moore
3 years agoWhat a challenge. I look forward to learning what happened next!
Amy Martinez
3 years ago AUTHORThank you!
Kaybee Lives
2 years agoThank you for your honesty and openness in sharing your story. What a difficult choice to make and as someone who has always worked hard for what you have, it can be an eye opening experience.Kaby