My partner and I recently attended a support group meeting for people who have (or have had) his illness. The purpose of the meeting is to share ideas and information about how the disease can be treated, and how its symptoms affect not only the person infected, but her or his spouse and family.

What I heard a lot about was divorce. Yeah, marriage dissolution.

The disease symptoms causes the person with them to behave with extreme emotion at random times with loud outbursts. He (or she) is on an emotional roller coaster, and the extremes are unpredictable. My partner and I have experienced that situation — a lot. We had no evidence, until now, to know that happened with almost everyone with this disease and how severely relationships are strained by emotional outbursts caused the disease’s neurological symptoms. I sure can attest, though, this disease “has a voice” and that voice gets very ugly sometimes.

It really bothered us to hear that more than half of the some 40 attendees at this meeting had divorced or were separated, pending divorce — all due to how the illness causes symptoms that mess with the head, and incite strong arguments, anger, and other problems. Will the relationship I share with my partner be a similar casualty?

No, but we learned a lot about why that happens, and are taking active measures to prevent it. (Beware: this is a long post! Read on!)

Let me explain a bit — the disease causes long-term debilitating physical symptoms, while at the same time, also causes the person who has the illness to have neurological symptoms too, such as confusion, “brain fog” (forgetfulness), and thoughts that no one is helping them, so they feel worse. The brain symptoms are severe. He can’t remember what any doctors or spouse (i.e., me), has done to help alleviate the suffering. He feels all alone, dwelling in pain and anger. Mood swings, pain, dizziness, anger at aphasia (having a word in his mind but he can’t say it) are common and very frustrating.

On top of that, most of these group attendees have had significant financial setbacks as a result of paying for tests and treatments that are not covered by health insurance. Some of these people are not covered by health insurance. We heard that six people have had to pay over US$25,000 each for the costs of medical tests and treatments out of their own pocket this year alone. They borrow heavily, or if they cannot borrow, they take money from their children’s education funds and from their retirement savings. Two people lost their home to foreclosure because they could no longer afford to pay the mortgage.

The financial strains carry through to extreme strains on a marriage. Many marriages (of healthy people) break up due to problems with money: lack of communication about joint finances, no budget, no savings, spendthrift habits of one (or both) spouses, and spending money on whims (such as frequent dining out and entertainment, and toys/gadgets). But the cost of tests and treatments not covered by insurance only makes a bad situation worse, and sometimes untenable.

With this disease, insurance companies will not pay for the more costly tests and treatments because our wonderful U.S. Government agency that studies infectious diseases does not believe this disease really exists — giving insurance companies an “easy out” to deny payment for ongoing treatment.

My partner and I left that meeting quite shaken. We learned, though, that the course of action, tests, and treatments that my partner has had done have been correct. We also have learned that there are some doctors out there who offer all sorts of, ummmm… “interesting”, expensive treatments that have no proven resolution to the illness.

I also learned that my partner and I are better educated about the disease than most. I was sorry that few people do not understand the basic science of fundamental organic chemistry processes such as how the body works to make energy, support cell division, and how the spirochete protects itself against being killed by one-shot, short-term, antibiotic treatments.

My partner and I also learned how and why relationships were strained by one partner having the illness, and the other not knowing what to do and placing all trust in a physician, who may not know that much more than any other doc who is not an infectious disease expert. We also had confirmed not to trust what you read on the Internet. We were shocked to learn that half of the group were following treatment protocols that they downloaded from the internet and ordered expensive dietary supplements without discussing them with a licensed, practicing physician. (Some of these supplements are good, and some interact with each other or with prescription drugs. Never take anything, even over-the-counter stuff, in combination without talking to a doctor, or licensed pharmacist, nutritionist, or similar professional!)

Further, I confirmed how lucky we are. My partner has a primary care physician who really listens, and who wants to make my partner well. He has done a lot of study and research, as have I. His doc and I have had many factual discussions about treatment options, tests, and test results on an advanced level. My partner trusts me implicitly to know that I have only his best interests and his recovery through cure, in mind. Always.

We are also fortunate that we are both good managers of money. My partner, like me, has a “rainy day fund” that he has had to tap to pay for what his health insurance will not. While his ongoing tests and treatments are partially covered by insurance, there are costs that he has had to pay. And he can do that. Why? Same as you’ve heard before: we “pay ourselves” a full 20% of our net income each payday (this is the rainy day fund) and we don’t spend money that we don’t have. We pay our credit cards in full each month. We don’t have any loans. Drive an old car? Fine; keep it in good shape and don’t care if the neighbor drives home in a newly leased Lexus. Pack and bring a lunch to work and eat dinner at home every day? Saves us over US$5,000 per year. Hell yeah we do that!

We also learned that serious strains on a long-term, loving relationship, can and do occur as a result of this disease. I’ve learned to let a lot “roll off my back” and keep my eye on the prize: a healthy partner. Thank goodness I am a patient man. Thank goodness, too, that I am still in love with my best friend and he is in love with me. My personal goal: a healthy partner on our 20th anniversary this coming April.

Life is short: show those you love how you love them, despite the challenges.