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Am I Sick or Is This Normal For Me?: Distinguishing Symptoms When Chronically Ill

When the average person wakes up with fatigue and body aches, it is a good indicator that they are developing a cold or flu. The same goes for other symptoms like nausea, weakness, and difficulty sleeping. For a chronically ill person like myself, these symptoms might be signs of a cold or flu, or they might just be regular, everyday symptoms of chronic illness. This makes it difficult to discern whether I am getting extra-sick or if I am just regular-sick.

Chronic illness can lead to a lot of symptoms

Chronic illnesses often lead to one or two main symptoms, but can also lead to a multitude of additional symptoms. Ankylosing spondylitis causes joint pain and fatigue, but can also cause inflammation in the eyes (known as uveitis), bowels, and lungs, fever, loss of appetite, vision problems, and swollen digits. Because AS affects my whole body, I can never be sure if the cause of a new symptom is AS or something else. On top of that, any medication used to treat AS comes with side effects. When I feel nauseous, I can’t tell if it’s a symptom of AS, a side effect of my biologic medication, or a different reason entirely.

It makes figuring out non-AS health problems complicated

As you may have guessed, this makes it complicated to figure out any non-AS health problems. Anytime a new symptom pops up — if my ribs ache, if my leg feels numb, or if I get a wave of nausea — I think, “oh, it must be AS.” I’m so used to this illness causing unexpected symptoms, and because it is a progressive disease, I wouldn’t be surprised if it spread to other parts of my body. However, attributing every symptom to AS can lead me to ignore other issues requiring medical attention. For example, in 2018 I was experiencing debilitating fatigue that I assumed was caused by AS. After a few doctor’s appointments, my doctor discovered that I was severely anemic and the high level of fatigue was actually caused by anemia. This issue almost went unresolved because I presumed AS was the cause.

My tiredness and pain threshold is different now

Describing my symptoms to doctors can also be difficult — a chronically ill person’s definition of “tired” and “achy” is different from the average person’s. When a doctor asks me if I am fatigued, the answer is always, “yes,” because I have AS. If I were to develop a cold or flu, I don’t know whether to expect the same level of fatigue that I already feel every day, or worse-than-usual fatigue. My tiredness and pain threshold has changed since developing AS, so a symptom must be unique or severe for me to recognize it as something unusual.

This is my new normal

It has been difficult to adjust to a life of pain and fatigue, but this is my new normal. Aches and pains don’t phase me and I don’t remember what it’s like to get “sick” without already being sick. AS has taught me to be hyper-aware of my body, but I am still learning what is “normal” in a chronically ill body versus what is abnormal, and constantly asking myself, “am I getting sick or is this normal for me?"

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