The Truth About Chronic Illness and Fatigue

Fatigue is common in those living with chronic illnesses. But this symptom is often treated as an afterthought. Here’s what you should know and what might help.

When it comes to chronic illness, there’s one symptom that tends to be mentioned almost universally and is as debilitating as it is prevalent. That symptom is fatigue.

When I was 35 years old, I began to experience many troubling symptoms that were affecting my life in a big way. My biggest concern was fatigue. I felt exhausted, and just getting through a normal day became extremely difficult.

Fatigue is much more than feeling tired. Fatigue is a feeling of constant exhaustion and lack of energy that interferes with normal daily activities.

The best way I can describe it is the feeling you get when you’re coming down with the flu. It’s that achy-all-over worn down feeling that just makes you feel like you have to lie down.

When I’ve had little sleep or have had a physically hard day’s work, I understand why I might be tired. I can usually link it to something in my life.

But this fatigue became omnipresent. It stopped me from doing the things I needed to. I certainly wasn’t worn out from my day’s activities because I had already cut them down to the bare minimum.

Getting answers about why I was feeling this way would prove to be a more difficult process than I expected. Fatigue among the chronic illness communities has long been ignored and misunderstood. Let’s discuss.

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Listening to my fatigue

When I went to my primary care doctor and mentioned the symptoms I had been experiencing he expressed some concern about my joint pain. The fatigue, on the other hand, he put down to me “getting older.”

But I knew that the level of exhaustion I was experiencing was not normal. It felt like my body was screaming at me that something more was going on.

My doctor didn’t seem too concerned about the fatigue I was experiencing, but I pushed for blood work. I had a hunch that I may be suffering from an autoimmune disease and so I requested an autoimmune panel which he agreed to.

My blood work showed a positive rheumatoid factor which coincided with many symptoms I was experiencing. I was referred to a rheumatologist who diagnosed me with rheumatoid arthritis (RA).

Fatigue and chronic illness

Though it varies by condition and other factors, studies suggest that the prevalence of fatigue in those living with chronic conditions is between 40–74%.

Fatigue can negatively impact your physical and mental functioning as well as reduce your quality of life.

Research from 2015 analyzing a survey conducted across the United States found that 98% of people living with autoimmune diseases reported that they live with severe fatigue. 9 in 10 of these people said that it was a major issue for them, with 6 in 10 stating that fatigue was the most debilitating symptom.

It can also be exhausting living with a chronic illness, and making sure your “invisible” symptoms are prioritized by your doctor. You might have to make many choices about treatments and lifestyle, and decision fatigue might be impacting you too.

Why is fatigue treated as an afterthought?

Despite how common fatigue is for those living with chronic illnesses, it doesn’t always get the attention it deserves.

It can be difficult to quantify fatigue, with no definitive medical test used to measure it. While blood tests might be used to indicate factors that can influence fatigue, such as iron levels and blood count, fatigue is a complex symptom impacted by many things.

As fatigue is often unrelated to disease severity, it might be neglected as a target for treatment, with disease-specific symptoms prioritized instead.

The mechanisms behind fatigue are also relatively unknown and currently under research.

For these reasons, fatigue is a symptom that doctors may not always be able to prioritize. Some may even dismiss your fatigue or insist that it’s psychological — a behavior known as medical gaslighting.

Medical gaslighting is the act of dismissing or minimizing health concerns, and it happens to women and People of Color the most. For example, a study from 2021 showed that doctors routinely prescribe lower doses of pain relieving medication to Black patients than to white patients.

Fatigue is difficult to treat, especially with chronic illness

Fatigue can be difficult to treat, and changes in lifestyle are often recommended. These can often feel quite ironic. Trying to exercise more to reduce fatigue while you’re feeling fatigued is quite the challenge.

But this can be even more difficult when you live with various chronic illnesses. For example, as someone living with RA, I know that exercise is incredibly important for my health and mobility. After all, “motion is lotion” for joints. The problem is I feel so worn down most of the time that the thought of exercising or doing physical therapy can be overwhelming. I also know that when I exercise I will need some time to recover, depending on how hard I push my body.

Fatigue can also be a potential side effect of many medications used to treat various chronic illnesses, including pain medication, muscle relaxants, biologics, and infusions.

The last time I visited my rheumatologist, I mentioned that I often feel more fatigued after my biologic injection. They explained that the biologic medications used to treat chronic illnesses will help with other symptoms first but that it can take a long time (6 months or more) before patients notice any difference with fatigue, if at all.

So what can help my fatigue?

Treating fatigue while living with chronic illness may require a multi-faceted approach.

If your medication is causing more fatigue, you could ask your doctor about ways to mitigate this side effect. You might be able to switch from pills to injections, or change the time of day that a medication is administered. For example, you might decide to do an injection on a weekend when you have more time to rest.

Checking for vitamin deficiencies such as vitamin D, vitamin B12, and iron may also help to combat fatigue.

Healthy lifestyle habits such as getting quality sleep, exercise, and eating an anti-inflammatory diet should also help to mitigate fatigue.

The more information you provide to your doctor, the better the chances that they can help uncover any underlying causes of fatigue. It can be helpful to emphasize when something is not normal for you.

There is no simple answer for solving fatigue, so it’s important for chronic illness patients to be upfront with loved ones about how their illness affects their energy levels and to advocate for themselves in all walks of life.

Learning to recognize fatigue

Fatigue is a very common symptom for those living with chronic illnesses. For me, it was the most debilitating symptom I had that eventually led to my RA diagnosis.

Unfortunately, there are many reasons that make it difficult to recognize, measure, and treat fatigue.

That’s why it’s really important that you listen to your own concerns and worries. If you think fatigue is interfering with your daily life, know that you’re not alone. There may be things you can do to reduce this fatigue, but it’s also important to rest when you need to.