Why Can't I Work?

This question has been asked of me a few times throughout the past 14 years. Sometimes, it’s asked with genuine curiosity; others seem to demand a reason. 

Here is my first answer: I’m doing everything I can to heal from years of trauma, stress, and disease. Regarding income, I’m doing the one thing I can do right now to work towards building my career: writing, which I’ve been practicing my entire life. 

In general, I'm working with my therapist to fight the compulsion to explain myself to everyone. Still, I will explain my health situation to help others understand what it’s like to have an invisible disease. Also, since I’ve asked for financial help many times over the years, I want to be transparent.

Before I answer this question, I want to clarify that I am not looking for pity. I'm tough, and I'll figure this out, but autoimmune disease sufferers often feel misunderstood, so I’m sharing my symptoms here to give my readers a complete picture of how disease, stress, and grief have affected me.

So, here we go. Why can’t I work?

RHEUMATOID ARTHRITIS: I have rheumatoid arthritis that was incorrectly diagnosed as fibromyalgia in 2013. The result is that I have bone erosion, cartilage damage, and chronic pain, as the most significant damage occurs within the first two years of onset. I wasn’t diagnosed with RA until 2021, so when I began treatment, much of the damage was already done.

The result is that I have chronic joint pain, which is made better or worse with movement. Light exercise and stretching can help to reduce pain, but things like sitting at my computer for an hour or two can cause stiffness, swelling, pain, and weakness in my shoulders, elbows, wrists, and hands. Sometimes my hands don’t work well; that’s kind of a big deal for a writer! I’ve also lost strength in my hands so things like opening milk jugs or water bottles is often difficult or impossible. Also, I’ve become more clumsy, dropping or at least fumbling things that I’m carrying. (Insert football joke here.)

When I was on retreat at my parents’ house, I was talking to my mom about health issues. She told me something simple yet eye-opening. She told me that she can no longer lift a stack of plates into the cupboard and that she has to put away a few plates at a time. I haven’t been able to put away a stack of plates for a few years. We also compared general symptoms of getting old, and here’s the thing: My mom is in better physical health than I am! She’s still such a busy bee, and I have to divide even the simplest chores into manageable chunks. Although now that I think of it, Mom does that, too, as a way to create a balanced day, so I'm trying to follow her example.

Also, stress plays a significant role in the development and progression of rheumatoid arthritis and other autoimmune diseases. I don’t think it’s necessary to go over the reasons I’ve been stressed out for 14 years. Still, chronic stress can cause the disease to worsen by increasing inflammation, reducing treatment effectiveness, and causing overproduction of antibodies that attack healthy joint tissue.

SPINAL COMPRESSION: I have several severe compressions, a disc protrusion, and a narrowing of the spinal canal that causes extreme pain, tingling, weakness, and numbness, mainly in my arms and hands. On July 3, 2024, I woke up with the worst pain I’ve ever experienced, the pain of a pinched nerve and subsequent tingling, weakness, and numbness. However, that description doesn’t describe the severity of my discomfort. Unless I was lying in my bed with ice placed strategically under and on top of my back, shoulder, and arms, I was in unimaginable pain. It felt like being electrocuted, and unless I was holding my arm straight up or resting it on my head, the pain was almost constant. (How does Jen know what it’s like to be electrocuted? Imagine growing up on a farm with electric fences, and you’ll figure it out.) Letting my arm hang down was excruciating, as was holding my arms out or carrying anything. Al had been in the hospital, but when he came home on July 4, I had to resume my care for him no matter how difficult. For at least a week, when I gave him his tube feeding, I stood there and cried because I had to lift my arm and hold it up long enough to let the formula drain into his tube. I stood there and sobbed because it was a two-hand task, but my husband had to eat. This was after I had gone to to ER, and they gave me morphine, which didn’t even touch the pain. My agony eventually subsided when my doctor gave me a stronger nerve pain medication than I was already using, I went to the chiropractor, and I slept on ice for several weeks. As of right now, I still have weakness, numbness, and tingling in my right arm and hand. Hopefully, continued chiropractic care, exercise, and pain clinic visits will help improve this situation.

SURVIVAL MODE/CHRONIC STRESS: Survival mode, specifically in my case, means I’ve been working out scenarios in my head, often following them to the worst possible outcome, and then figuring out how I was going keep our family afloat. Another word for this is fight-or-flight, meaning my body has been on high alert for years. My brain and body have been bathed in cortisol, a chemical that’s a vital part of our body’s stress response, but when cortisol levels remain elevated for an extended period (chronic stress), it can lead to a range of health issues, including weight gain, particularly around the abdomen, weakened bones, high blood pressure, impaired immune function, mood swings, difficulty sleeping, increased risk of diabetes, and even cognitive decline. The reason for this is that the overproduction of cortisol causes structural changes to the amygdala (responsible for emotions), hippocampus (responsible for memory), and the prefrontal cortex (responsible for decision-making).

Surprise, surprise, I’ve experienced all of these. Cognitive decline came in the form of lack of focus, memory impairment, inability to make decisions, and mood swings. Or, as I like to call them, crying jags.

It’s frustrating, but I’m still working to escape survival mode. My anxiety is often high, and I'm facing a completely unknown future. My entire world changed in a matter of a few years. I’m working with my therapist on techniques to lower my anxiety and the cortisol level in my body. 

I’ve been in survival mode for 14 years, since Al’s first stroke in 2011, with a new crisis or trauma occurring every 2-3 years. I reached burnout several times and kept going anyway. Caring for Al at home was the nail in my coffin. I gave Al every bit of myself during the last nine months of his life. When he died, I had nothing left. 

I was already exhausted and burned out before his final stroke in 2023, but I promised I wouldn’t let him die in a nursing home. I summoned every last bit of strength I had and prayed to God that he would allow Al to come home to die. I also prayed that God would give me what I needed to help care for him. I had physical help from Medicaid caregivers and my children, but the emotional weight of watching him die was the last thing I was able to do.

Now, five months after his death, I’m starting to feel just a little more energy and focus, but not enough to restart my life as a fully functioning, mentally capable woman. I suspect that will take much longer. 

It’s impossible to describe how bare-bones my mental ability was when Al was dying, but here’s a short illustration of how much my brain couldn’t handle in the midst of Al’s care. After he fell asleep each night, I tried to get a little time to myself. The kids were watching Dune one night, so I joined them. I freaked out when the opening scene began with unfamiliar scenery and war breaking out in a sandstorm. My brain could not process new information. A movie I’d never seen, with sounds and sights and a storyline that made me feel like I was in a foreign and unfamiliar land. I freaked out, and the kids were quite surprised when I blurted, “I can’t handle this,” and I went to bed. My mental state is slowly improving, but I still struggle hard with brain fog, confusion, memory issues, and processing new information.

FATIGUE: I have debilitating fatigue, which is very different than normal fatigue that people experience after exercise or other exertion. I’ve spent my life feeling like I was just lazy, not trying hard enough, or there was something wrong with me because I didn’t have the energy to do many everyday activities. Autoimmune fatigue is a more profound and persistent state of tiredness that isn't easily alleviated by typical methods of recharging energy. It is typically more persistent, overwhelming, and uncontrollable.

CHANGES IN THE WORKPLACE: Besides the burnout and chronic stress, I haven’t been out in the workforce for over ten years, and I don’t have much experience with the jobs out there, and it’s challenging to learn new things while my brain is healing. I consider myself a jack of all trades and master of none. I have a lot of experience in the education arena; I have a good understanding of psychology and a general grasp of many medical terms and practices. But I'm not a certified teacher, I have a Bachelor's degree in psychology, and no training in medicine or even medical terminology.

MEDICATION: This isn’t as much of a factor as the others, but I give myself weekly shots of Enbrel, one of those scary medications on TV that lists all sorts of terrifying side effects. It’s in a class of medication called a biologic which suppresses the immune system. This means I’m at higher risk for contracting illnesses and infections, and that common illnesses could make me much more sick than the general population. Working in a school, medical setting, or other jobs in high-traffic areas is not an option. For this reason, a remote job would be ideal.

SUMMARY: My baseline pain level most days is around 3-4. Depending on my daily activities, pain and fatigue can climb quickly. It's rare for me to wake up with no pain. I experience debilitating fatigue which is made worse by stress, anxiety, and even some activity. It’s a delicate dance between exercising and pushing myself too far by doing something simple like cleaning my whole room in one day and not dividing it into manageable chunks. If I push too hard, I may need to stay in bed the next day or at least limit my activity. I also experience regular symptoms like nausea, IBS, low-grade fevers, balance issues, dry, gritty eyes, and hair loss.

That said, I have to make daily decisions about how much I can actually accomplish based on the above factors.

It’s extremely hard to have an invisible disease and to have people in my life who don’t understand or believe the severity of symptoms. Do you know how frustrating it is for people to say, “So-and-so works, and she has RA. Why can’t you work?”

Here are the things I'm doing to improve my physical health, brain power, and emotional health. And to be completely honest, just trying to improve my health is a part-time job.

• I'm beginning to move my body by stretching, strengthening, and moving my joints to gain mobility.

• I'm trying to get outside and get sunshine on my face.

• I'm working on introducing anti-inflammatory food and meals into my diet.

• My son and I are taking advantage of a free month at the YMCA, where I can do my all-time favorite exercise - swimming! It's also the best low-impact exercise. In addition, I'll be starting to do some weight and strength training. (Does anyone have some tips for starting with weights?)

• I'm working with my doctors on treatment plans, which include medication, physical therapy, chiropractic care, nerve function tests, visits to the pain clinic, etc.

• Finally, in terms of making myself more marketable, I've enrolled in a few classes on Coursera.org. The classes on Coursera are courses from top universities, and I will receive a certificate upon completion of a course like medical billing and coding. They are college-level courses that require a decent time commitment to complete. I truly enjoy learning, but it's going to be a slow start as my brain continues to heal.

• I invested in a one-year subscription to Lumosity, an app Al used. This brain training program uses games to help improve cognitive skills.

• Last but not least, I am writing and researching topics like monetizing my blog and finding an agent or publisher. I'm also applying for freelance jobs on Upwork and exploring other freelance options. And I'm beginning to re-write many of my Wattpad novels to publish on Amazon for Kindle.

It is extremely difficult to move forward right now. I didn't even mention grief in this post, and although I've turned a corner in terms of acceptance, grief is still very heavy and real.

I'd like to write more about invisible diseases because I know there are many people like me. For now, I'll share this article because it addresses the most common experience of autoimmune disease sufferers - fatigue.

The Spoon Theory illustrates how fatigue affects people with invisible illnesses. https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Thank you to all who continue to read my blog and support me.

More to come!