It’s that time of year for verifying my condition with disability. Not only is there a ton of paperwork completed by my doctors but I get a questionnaire with a phone interview as well. That’s where my rant begins, the phone interview. It’s 8am after a sleepless night due to hip pain from my current flare. The insurance agent handling my disability claim asked me to describe a normal day. I answered, Hmmm, that’s a tough question to answer. She replied, what do you do all day? In her tone of voice, the question seemed condescending as if to say ….What do I do with all my free time now that I’m on disability? In my head I quipped, she probably thinks I spa and eat bon bons all day. There were several ways to answer that question and the answer I wanted to give was screw you.. you have no idea how much pain I’m in every day or how difficult life is with limitations. But I gathered my wits and responded.. I don’t have normal days, it depends on what is happening with my lupus.
And then I answered with gusto… Some days are eat, sleep, medicate and repeat. Other days are doctor visits requiring tests, labs, or procedures like injections. And occasionally there are days when I might feel good enough to socialize (that means to go to church, or meet a friend for lunch or dinner or a movie with family. “Or” is the key word and it is a short amount of time like a couple hours only! If I’m doing well, I get to pick one outside activity per day depending on how “good” I feel. ) Shop til we drop has been off the table for years!)
Taking a breath, I continued, there are days that I spend coordinating doctor appointments, lab appointments radiology appointments, Rheumatology and Cardiology appointments and it can be exhausting. The mere fact that there’s obviously a problem that is requiring said appointment is just the beginning.
She replied with ok, obviously not getting the picture. Thought needs to go into how I will accomplish tasks such as distance from parking into office, stairs or elevator. For a normal person, this is a non issue therefore no need to plan ahead. On days when I have appointments nothing else is planned so I conserve my energy to accomplish that task. Then there’s follow up, calls and coordination of getting results, care planning with more appointments and insurance companies.
It really is quite ridiculous how much effort goes into managing a chronic illness. I don’t have a care giver. I’m on my own. I make adjustments according to how I feel. I’m forced to slow down from lupus.
I continued to try to explain by adding, How I feel changes every day and sometimes multiple times a day depending on what issues arise such as fever, pain or fatigue. On days when I experience all three at once, I’m limited to couch or bed. After I finished blurting out my tribulations, she responded with “you sound upset”. Unfortunately my curt tone of voice gave the insurance adjuster a clue to my feelings and I copped an attitude at that point responding, perhaps you should do some research on chronic illness or at least read my file from the past 10 years! The adjuster proceeded to ask for more details. I was asked why and how and could I work on a computer or take classes to obtain another job. Then, she asked, if I had attempted all treatments possible! That really rattled my cage! I responded, are you kidding? Do you think I enjoy feeling like this? Unbelievable!!!!!
Obviously this woman had not heard nor understood what I had explained. I understand they have a job to do however perhaps they should be required to have some medical training and absolutely need some sensitivity training. By the time I got off the phone 30 minutes later I was upset, frustrated and feeling hopeless. My blood pressure had gone from 118/74 to 160/88. I don’t think that helped my condition. Stress causes lupus to flare. I will be thanking the insurance agent for my upcoming flare or worsening of symptoms!
That’s where my rant begins. I’m a nurse with a chronic illness called lupus. Lupus is an autoimmune disorder. It also correlates to other immune diseases such as sjogrens and hypothyroidism. I have both conditions. My lupus can go into remission. It hasn’t! I’m not living the good life because I don’t go to work and receive disability. I’m limited not only by my health problems but income as well. I was once active and productive. I’m maintaining my home poorly compared the standards when I was healthy. I’ve learned to let go of expectations. I’ve learned to accept my limitations. Gone are the days of scrubbing vigorously, now a light cleaning with a Clorox wipe is all I can muster. I don’t have the energy to do it all myself nor do I have extra finances for hiring cleaning personnel or any other assistance. I manage by budgeting my income.
Instead of being healthy and active, I desperately struggle to find some normalcy in my life. I’m always searching for solutions to whatever is ailing me or receiving treatment for my symptoms. My body is in a rebellious state all the time but sometimes the rebelliousness has vengeance. If I could choose (IF ONLY), I would gladly go to work everyday, a job I loved and found rewarding by the way. Instead I feel broken and in pain almost all the time!
Perhaps I’ll include a letter with my written evaluation titled: Next time spare me your ignorance and save me some understanding:
– I did not get lupus by being irresponsible. It was not my choice!
– Being on disability is not like a great vacation! I struggle every day to do normal tasks. Sometimes getting out of bed, showering and making an easy meal is all I can accomplish. A good day for me would likely be the equivalent of a sick day for you.
– My emotions are frazzled. I deal with inability to work, perform normal tasks, financial stress, changes in family dynamics, isolation, and chronic pain along with fatigue and erratic heart rates.
– Grief is something I fight everyday. Grief for the loss of the person I once was. Sadness because every day life is a struggle to survive.
– My illness is complex. It’s like a hydra. You know that mythical creature that sprouts multiple heads when one is cut off two more grow in its place. It seems as soon as we get one problem managed another one pops up and when it’s really bad multiple problems arise at the same time. Management is the key word since there is not a cure for lupus.
– The debilitating fatigue I feel is more than feeling tired. It’s hard to explain to someone who is healthy. It’s the feeling of your body telling you to sit down or it will make you fall down. So I listen to what my body says however most days I have to push myself to accomplish simple.
– Too often, I “pay the price” for participating in activities that are important to family and friends only to require days or weeks to recover. I’m not lazy or crazy or trying to avoid activities. I need to rest often and may have to cancel plans last minute. Once severe fatigue kicks in, there is no other option other than to rest.
– There’s some form of pain in my body every day. But there are different kinds of pain I deal with regularly and some daily including headaches, joint pain, muscle pain and nerve pain.
– Occasionally I experience something called Brain fog. Sometimes I have difficulty communicating, I know what I want to say yet I can’t find the words to communicate effectively. Not only are there difficulties with word finding but also memory and concentration. With severe pain, it’s difficult to process anything!
– I live in constant fear. My immune system is overactive, my body is at war. Instead of attacking infections, my immune system fights my body’s own organs, joints, nerves, and muscles. Most of the time I’m on steroids to suppress my overactive immune system which leaves me defenseless against a minor cold. For example, a healthy person could catch the flu or a cold that will last a few days but for me it could last weeks to months then developing into a devastating dangerous infection.
– Believe it or not. It takes a lot of effort to manage my illnesses. I have a rheumatologist, nephrologist, cardiologist, endocrinologist, orthopedist, ophthalmologist, and occasionally visit an ENT.
– I have to be regimented to make sure I get adequate rest, avoid trigger foods, take medications at the correct times, all the while avoid stress to try to keep flares under control.
– I would give almost anything to feel “normal”… I’d like to eat pizza and shop all day then stay up late. I can’t because I know with 100% certainly that I will “pay for it later.”
– It’s a daily struggle to try to understand my body and to do ordinary tasks others take for granted. It’s difficult to find support and I’m surrounded by people who don’t understand my challenges. Some illnesses like lupus appear “invisible.”
Perhaps approaching people with compassion and support and attempting to understand chronic illness will be beneficial to all involved. I’ve also provided a link about fatigue. (https://wordpress.com/post/livingwithlupus2016.wordpress.com/76)
Thank you for taking the time to read this.