Rheumatoid Arthritis: the invisible illness

An ‘invisible illness’ refers to a range of health conditions that aren’t immediately evident to others, encompassing medical, mental, and neurological disorders. This includes diseases like ankylosing spondylitis, fibromyalgia, psoriatic arthritis, and rheumatoid arthritis (RA), among others. Here, Craig Hardingham, Digital Technical Director in Sweco’s Transportation & Urbanisation division shares his story of the challenges he has faced in learning to live with rheumatoid arthritis.

People with RA, or similar inflammatory arthritis conditions, often suffer from pain, swelling and stiffness in their hands, wrists, feet, ankles, and neck. They also experience intense tiredness and mental fog. Symptoms can also extend to the lungs, heart, and eyes.

These symptoms are usually not visible because they’re hidden by clothes, such as shoes and gloves, or beneath long sleeves, with the only outward clue being that the sufferer appears a little self-consciousness.

RA is often characterised as an “invisible illness” where sufferers might look fine on the outside but are dealing with substantial health issues. This can result in misunderstandings and skewed perceptions from others.

Life pre-rheumatoid arthritis

I began experiencing symptoms of RA in my late twenties. During my younger years, I was actively involved in sports, playing 11-a-side football for a local pub team and later, 5-a-side with colleagues from work. Recovery after games became increasingly difficult; I felt noticeable pain in my knees and ankles, especially in my knees which would swell significantly, requiring ice packs to alleviate the swelling.

Initially, I attributed these issues to aging and the cumulative strain from years of sports activity. However, considering my family history—both of my grandmothers had rheumatoid arthritis, and symptoms were emerging in my father and sister as well—I decided it was prudent to seek medical advice from my GP for an evaluation.

The diagnosis

My blood test returned showing positive for the rheumatoid factor, so was sent to the hospital for an MRI scan and X-rays of all my joints. The results indicated that I was in the early stages of rheumatoid arthritis.

Rheumatoid arthritis is an autoimmune disease. This means your immune system (which usually fights infection) attacks the cells that line your joints by mistake, making the joints swollen, stiff and painful. Over time, this can damage the joints, cartilage and nearby bone.

Day-to-day life

Over time, my approach to managing RA has progressed. In the beginning, the focus was on physical therapy, such as exercises and stretches, to fortify the muscles around my joints, lessening the stress on them. However, as the severity of my condition increased, I transitioned to pharmacological treatments. I started with a regimen of oral medications and have since moved on to biologic injections, which require self-administration every week, in addition to my daily pills.

These medications help me to manage the pain and improve my mobility, but it’s crucial to be mindful of their effects on other parts of my body. The potent mix of daily medications necessitates consumption with food to prevent potential harm to my stomach lining, such as ulcers.

One of my medications, methotrexate, can affect my liver’s function, raising the risk of liver damage. This necessitates careful monitoring of my alcohol consumption, which has significantly decreased since my diagnosis. To keep a close eye on my liver health and its response to my treatments, I undergo monthly blood tests with my GP.

Since RA is an autoimmune disorder, the medications that treat it suppress the body’s immune responses to prevent it from attacking itself. Consequently, my immune system is compromised, placing me in a ‘high-risk’ category for infections. This became especially evident during the COVID-19 pandemic, when I had to isolate from the outside world for an extended period until vaccines became available to offer some protection.

The way I manage my condition fluctuates with each day. On certain days, my joints become inflamed, necessitating the use of ice packs for relief. At other times, immersing myself in a warm bath helps to ease joint tension.

To prevent my joints from stiffening, I make it a point to get up and stay active at regular intervals. I’m also very cautious when it comes to taking painkillers, fully aware of their potency and the potential risk of dependence.

More than just a physical illness

RA doesn’t just affect me physically; it takes a toll on my mental health as well. The fatigue that comes with it is often overwhelming and can negatively affect my ability to focus and concentrate.

The pain is relentless, akin to a persistent toothache, but it’s in my ankles, knees, hips, lower back, shoulders, neck, and hands. Living with this pain everyday weighs on my overall mood, and there are days when maintaining a positive outlook is a real battle.

Lately, I’ve had to resort to using a walking stick to alleviate pressure on my joints, especially around my hips—a reality I hadn’t anticipated at just 44 years old.

With the walking stick now part of my daily life, my previously invisible condition has become conspicuous, prompting queries from people like “What happened to you?”

I’ve also been issued a disabled parking blue badge to facilitate my day-to-day activities. Whenever I use it, I can’t help but feel self-aware, often sensing the weight of judgment from passers-by who might question whether I appear ‘disabled enough’ to warrant parking in designated spaces.

Why I wanted to share my story

The intention behind sharing my story in this blog isn’t to gain sympathy or to have others pity me, but rather to increase understanding of a disease that affects my life every day.

Since disclosing my condition, I’ve been met with incredible support from my family, friends, and colleagues. My colleagues and leadership team have shown great kindness, frequently checking in on me to ensure I’m managing well, which I deeply appreciate.

I hope that this blog has provided insight into the day-to-day experiences of someone with Rheumatoid Arthritis and helped to raise awareness about the condition’s impact. If you have any questions or wish to engage in a deeper conversation about this topic, please feel free to reach out and connect with me on LinkedIn.