What Do You Wish Your Doctor Understood About Lyme Disease?

Many Lyme patients hit a brick wall when we are faced with doctors who belittle our suffering and who are not knowledgeable about Lyme disease and its devastating effects. We asked our Online Community what they would like doctors to understand when it comes to living with Lyme disease:

“That the symptoms are highly variable. Good days and bad days are one of the hallmarks of the disease. So, yes, I can get to the GP surgery today, chat away and seem perfectly fine but tomorrow or later on today, I may not be able to stand up for more than a couple of minutes without feeling like I’m going to pass out or have a heart attack.”

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“That the weather affects my symptoms. If it’s hot and sunny, my joints feel better and I don’t need my walking stick. On cooler days, I can only walk at a snail’s pace with my stick and sometimes my head pressure is so bad that my balance goes. I am suffering from muscle wastage and what feels like thin skin. The thing I hate most is the fact that one minute I can feel so much better and I can make plans for the day. Then, the next minute, a random symptom pops up and I’m back on the sofa with a stabbing headache and blurry eyes and have to cancel my plans. I also hate the secondary problems Lyme disease can cause like thyroid disease and gallbladder issues. I hate the inability to lose weight despite such a clean strict diet as well as the sudden weight loss.”

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“That ‘looks well’ doesn’t mean ‘is well”.

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“That Lyme disease is NOT rare.”

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“That this illness brings never-ending pain, with no relief whatsoever as well as crushing tiredness and fatigue. On top of that, there is total ignorance from GPs and hospital consultants.”

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“Just how devastating it has been and how Lyme changes everything. I go to each appointment trying to explain my symptoms but the doctors can never relate. They don’t see how I am every day or the person I was. I wish doctors had the time to try to understand the effect of this illness because then we wouldn’t be fighting to be taken seriously.”

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“That a little kindness, respect and concern for their patients goes a long way.”

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“I wish my doctor didn’t continue call me crazy. He has seen proof of my symptoms and deep down he knows about my condition but doesn’t want to be of any help. It’s easier to call me crazy than to educate himself on my disease and to help me. It’s truly upsetting to me.”

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I have walked out of doctors’ appointments, feeling the weight of the world on my shoulders. We may look well, we may be standing tall and be dressed professionally. That doesn’t mean that we don’t feel like we have a hammer battering our heads, that our muscles aren’t aching and that our joints aren’t on fire. Often we pull ourselves together as much as possible for medical appointments because if we don’t try to save ourselves, who will?

It is heartbreaking to learn how people in the Lyme disease community are treated by the medical profession when doctors are the very people who should be able to empathise, believe us when we say something is wrong and to try to help us. We understand that there is a lack of awareness about Lyme disease and we are working hard to change that. We also understand that doctors are overworked and that a seven minute appointment is never going to be enough time to delve into the complexities of Lyme disease but to be mocked, labelled as crazy and disbelieved is unacceptable in the face of so much suffering. In time, we hope that there will be a shift in the mindset of the doctors consulted by Lyme patients so that we can finally be treated with the respect and care we deserve. We can’t lose hope and we must remember that each little piece of the puzzle that is uncovered will one day create the full picture and the truth will come out.

Sophie Ward.