My career is in public health, where I spend my time advocating for people in order for a reduction in health disparities. The clients we serve are typically low income, with insurance difficulties, health problems or risks, and competing needs in obtaining the necessary resources to survive. I have worked to get people access to quality health care and the lifesaving treatment that they deserve. Now, I find myself going from a $60,000 career that I LOVE in managing a public health program to needing emergency food stamps in a matter of months because of a broken system and chronic illness.
I suffer from Sjögren’s Syndrome, an autoimmune disease that attacks and damages my moisture producing glands and other organ systems in my body. Along with complications and damage to my eyes, mouth, joints, lungs, and GI tract, I also suffer from nervous system damage. Specifically, I suffer from small fiber neuropathy that causes pain and numbness in my legs and dysautonomia. Dysautonomia is a term for medical conditions that cause a dysfunction of the autonomic nervous system, which controls the “automatic” functions of the body that we don’t think about. These include heart rate, blood pressure, breathing, and temperature control. In total, I have about 30+ debilitating symptoms daily with no treatments that have been effective in disease management.
In January 2017, I proceeded with my biannual Rituximab infusions to help treat my Sjögren’s Syndrome. Since I tend have medication sensitivities and known reactions to this medication, the protocol was changed for this round. I had done one infusion a week for four weeks with premedications (Benadryl, nausea, steroids, inhaler, beta blockers, Tylenol, Zantac, saline) to help mitigate a reaction. However, I still had a reaction to each infusion and had to absorb more medications into my body. This took its toll and I made the emotionally and psychologically devastating decision to take medical leave from my job. This is something that in the eight plus years I have been sick, I have never done. I had always pushed through my symptoms to try and live a normal life as possible, but I had finally reached my threshold.
Once the infusions were completed, instead of feeling better I seemed to feel significantly worse. I went back to work for a little while and tried to push through, but I couldn’t take crying each morning knowing how badly I felt and crying myself to sleep each night because I legitimately felt like I was going to die from my symptoms. So, for the last five months I have been on an intermittent medical leave from my job. It got to the point where I ran out of paid time off, and because I had intermittently gone back to work I didn’t qualify for short term disability payments through my job nor was I eligible for social security disability through the government. I no longer had an income.
In the meantime, I had and still am working with my doctors to come up with a treatment plan, but it was seemingly impossible. It was the doctor’s impression that my body was no longer responding to the Rituximab and that it appeared that the complications had outweighed the benefits. The next treatment option would be Intravenous Immunoglobulin Therapy (IVIg). IVIg is traditionally used to treat people with immune system disorders and evidence has shown both clinically and anecdotally that this treatment helps with nervous system damage. This treatment is my one shot at getting my life back, because I have exhausted my treatment options. Two physician recommendations, multiple insurance appeals, peer to peer physician reviews, multiple research articles as supportive evidence, physical symptoms that have left me homebound and out of work for months, and the potential of risking my life every time I leave my bed, is not enough for Aetna to approve this treatment.
So here I am now. I currently am still on unpaid medical leave. My doctor will not clear me to go back to work and I agree that my body cannot handle a full-time job at the moment. I am still fighting with my insurance company for this life saving treatment, with a hearing at the end of May. I need this treatment in order to get back to work and get my life back. However, if I don’t get cleared to go back to work by June 2nd, I will essentially lose my job and my insurance. Why even fight with an insurance company when I might not be receiving services in a few weeks? It is a lose-lose situation.
I have no income. My checking and savings accounts have almost been depleted. I have had to reapply for SSD, and even if approved I wouldn’t be receiving payments until the end of the year. I applied for SSI but may not receive payments for months, if approved. I have been proactive in applying for Medicaid, but my application is still under review because I still currently have employment based insurance (long story). I have so little money and resources that I qualified for the maximum amount of emergency food stamps for a family of one, while my application is being reviewed for long term benefits. Every day I worry about how my bills and how my rent will be paid.
Not only am I dealing with debilitating physical symptoms but the system is so broken that the stress is also wreaking havoc on my immune system. How did I go from a $60,000 a year career to needing emergency food stamps in a matter of months? This process has been emotionally and psychologically damaging. Seeing the ACCESS Card with my name on it being swiped at the grocery store as only resource for food; that same card my clients used to access their services. It is a reminder that we are all a very short way away from being in the same situation.
So here I am. Without treatment, I will continue to be unable to work. I am in the process of losing a job that I LOVE and a career that I have worked hard for, losing my insurance, losing my apartment, losing my stability, and completely losing my independence even before my twenty seventh birthday. I will continue to fight and am doing everything in my power to do all the things that I can control. However, it is not up to me. I am at the mercy of my job, my insurance company, my doctors, and the government. One thing is for sure, my story is not over yet.