Ranking my husband’s hemophilia bleeds based on pain levels

Last week, my husband, Jared, experienced a bleed above his knee joint. We were out on a day trip when he noticed the first symptoms. He felt a tightness in his knee, which he initially attributed to climbing several flights of stairs. It wasn’t painful for him, but as the day went on, it became clear that this was a bleed.

The incident sparked an interesting revelation: Jared’s bleeds cause varying degrees of pain. Some are extremely bothersome, while others are surprisingly painless.

Of course, the experience of pain is subjective — what’s painful for one person might be tolerable for another. Jared has developed a considerably high pain tolerance from three decades of regularly bleeding into his joints, thanks to his severe hemophilia B. Here in the Philippines, we don’t have access to prophylactic treatment, so bleeds are inevitable and frequent.

Despite Jared’s high tolerance, some bleeds still cause him to cry out in pain.

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His worst bleeds

Iliopsoas: Of all his bleeds, Jared despises most the ones that occur in his iliopsoas, the muscle group that connects the spine to the lower limbs. He describes the pain as constant and seemingly never-ending. He must find a position that feels comfortable and stay there. He often can’t sleep properly with a ‘psoas bleed, which makes him tired, irritable, and cranky.

Hip: Just like an iliopsoas bleed, the pain of a hip bleed is constant and overwhelming. However, he considers it a lesser evil since he still has some freedom to move.

Jaw: Never underestimate a jaw bleed! This particular injury gave him an excruciating headache that led to hours of tearful begging for the pain to cease.

Ankle: Since his ankle is his target joint, he gets bleeds in this area frequently. He’s used to the sensation but still finds it painful, particularly when the foot is bandaged and elevated.

His relatively painless bleeds

Bruises (even the gigantic ones he lovingly calls “Bruise Banners“): To Jared, bruises are just minor irritations. He likes to joke that somebody could hit them and he’d be OK. (Of course, nobody would actually do so.)

Knee: Jared thinks knee bleeds, while restrictive, are surprisingly painless compared with other bleeds. They also tend to heal relatively quickly for him.

Muscles: Jared describes the sensation of a muscle bleed as lingering, pulling pain that’s still tolerable. True enough, with most muscle bleeds (particularly upper-body ones) he can stay mobile and perform day-to-day tasks as usual.

Cranium: This is an alarming one. When Jared recounts the cranial bleed he had as a kid, he says that it wasn’t painful initially but slowly became more unbearable as the days progressed. This bleed left him with a seizure disorder that persists to this day.

What are the most and least painful bleeds you’ve experienced? Please share your thoughts in the comments below.

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