The way people talk about Lyme disease often does not match the reality of the illness. Those who have not suffered from the infection may view it as a minor nuisance – not the incredibly serious, long-lasting and common ailment it is.
So what is it actually like to live with Lyme disease? For some, it can be almost unbearable.
Months of pain and exhaustion
Kiara Keane was on vacation when she began to suspect something was wrong. Rather than enjoying a trip with her family, a wave of troubling symptoms washed over her:
- Exhaustion, likened to being hit by a bus
- Forgetting what she was talking about midway through conversations
- Constantly aching joints
- Long nights of sleep, yet feeling like she had barely slept at all
The rash is what ultimately gave it away, and back home in London, she got a diagnosis: Lyme disease. She received antibiotics and instructions to rest, with the expectation it would clear up in a few weeks. Instead, more than six months later, Keane still had trouble getting out of bed. It was another 18 months of joint pain, fatigue and anxiety before the issues subsided enough to be manageable.
Lyme disease is difficult to diagnose
In some ways, Keane was fortunate she received a fairly quick answer.
Lyme disease can be quite difficult to diagnose, NBC News explains. That supposed signature rash associated with the disease does not show up in many cases, and blood tests – which are now decades old – are notably unreliable. That means someone may go months without receiving a diagnosis. During that time, the disease can do even more damage.
The Centers for Disease Control and Prevention (CDC) has said it receives about 40,000 reports of Lyme disease diagnoses each year. But experts think, in reality, 400,000 or more people actually have it. That makes the disease more widespread than breast cancer, HIV and hepatitis C combined.
Still, many people do not take it seriously. Not just colleagues, doctors or employers, but even some insurers. They may choose to deny your Lyme disease-related long-term disability claim, even though you know deep down just how much you’re suffering.
These views often stem from the same place: a lack of understanding about just how destructive and disruptive the disease can truly be.