While it was a joy to learn about thirteen Lyme-literate doctors’ healing protocol during the writing of my new book, my favorite part of the process was asking the specialists how family and friends can help their sick family members. I felt a certain vindication in writing their answers to this question, as though finally, I was giving a voice to a community of people who so desperately need others to understand what they suffer with this disease. And I was, and am, part of that community. Indeed, there is a section in every health care practitioner’s chapter that addresses this question, and I figured that if the answers came straight from the horse’s mouth, so to speak, then friends and family who “just don’t get it” might be able to better assist their loved ones. After all, doctors are revered in our society and if the doc says that Lyme sufferers aren’t malingerers, then maybe they really aren’t. If the doc says that the sufferer will die without intravenous antibiotics, then maybe Dad will take his kid’s disease a bit more seriously.
I believe that part of the healing process involves obtaining the support of loved ones. I don’t know of anyone who has been able to get through this difficult healing journey without a helping hand. Many people with chronic Lyme have lost their homes, savings, jobs, friends, marriages and other important relationships. To say that such events impact the healing process only mildly is to throw away what might be the key to health.
To start, this disease is expensive. An average long-term antibiotic protocol costs over $100,000. If you, the person with Lyme, choose this route for your healing, you had better have a nice chunk of change in your bank account, a generous family member, or a job or insurance that picks up the tab. So having friends and family members who understand what the disease costs and who can help pay for treatments can significantly aid in the sick person’s recovery.
But that’s just the beginning.
If you had cancer, you know that people would flock to your doorstep with flowers, some soup and a whole lot of sympathy. But Lyme disease? Nah. Folks with Lyme just look so darned healthy, so instead of sympathy, many get all sorts of hurtful questions, such as, “Why can’t you hold down a job, if some days you can go hiking?” Or, “Do you really need to take ten thousand supplements?” So getting loved ones to understand the severity of the illness can help the sick person to receive adequate emotional support from them.
Many subtle, dysfunctional behaviors manifest in those with Lyme, and these either slowly erode, or outright wreck relationships. This in turn, hinders recovery. Such behaviors might include forgetfulness and ADD, which cause your loved ones to think that you don’t pay attention to what they tell you on a daily basis. Or clumsiness and motor dysfunction, which cause you to routinely break cups and spill coffee on the carpet. “Can’t you just be a little more careful?” You might be told by your husband, who just spent $2,000 for a new shag (forgive me the expression, British peeps 🙂 If loved ones better understood these quirks, relationships with those with Lyme might not fall on the rocks so fast.
And sometimes I think that the cognitive dysfunction and motor problems are really minor in their impact when compared to other neurological problems that people with Lyme face, such as anxiety and depression. These also contribute to the destruction of relationships, and the support network. I mean, try to explain your fits of rage over not being able to find your car keys or your favorite brand of goat cheese in the grocery store. What’s the big deal? Friends will wonder as they tire of you. They don’t understand that goat cheese might be the only protein that you can eat, and that always losing things makes you feel as though you are losing your mind. But you don’t even need an excuse for your mood, really. It’s just what those bugs do to your brain.
In my worst days with Lyme, I used to treat every life event as though it were an emergency. Anything and everything made me anxious. Going out to run three errands or having to talk to people on the phone overwhelmed me. Every little task, from organizing the papers on my desk, to having to re-evaluate my Lyme protocol, felt like a massive undertaking. I might as well have had the stress level of the president of the United States. Reading a book felt like too much–which is why, I am grateful that now, I have been healed enough to be able to write two. But try explaining this anxious feeling to a spouse who don’t understand why making dinner is akin to climbing Mt. Everest, or to friends who fail to comprehend why driving an hour to the other side of town sucks up half your daily adrenaline, because it requires more concentration than you have had in two years.
A good friend of mine lost her husband and son to Lyme disease. Her husband refused to believe she was ill and would not pay for her treatments. The lack of support caused her to become so sick that she became bedridden, and to this day, she is mostly alone in her journey. Only a few friends have come alongside her to help her to survive.
Hence my vindication through the book’s section, which is entitled, “How Friends And Family Members Can Help The Sick.” I have been more fortunate than my friend, but I have experienced enough misfortune and misunderstanding with this illness to become passionate about wanting to help others receive a greater measure of support from friends and family.
That said, and as one doctor in the book noted, friends and family members of the sick also need their own support and understanding. It is difficult to support a sick person through a prolonged illness that baffles even the best of experts. We are only human and even the most sanctified soul can only take so much screaming, depression, ADD, sadness and forgetfulness. Only the rich can help the sick through their struggles without stressing over the mortgage or how they will pay for groceries on top of their spouses’ treatment. Knowing this, as well, may help those with Lyme to not fall into the trap of believing that they are unloved, just because their loved ones cannot provide them with what they need.
But the focus of this section of the book is on the needs of the sick, because the misunderstandings to which they are subject are incredible, above and beyond belief, and they need people to fight for them.
It is my hope that this little section is read by those who have eyes to see, ears to hear, and a heart to receive the truth about what this devastating disease does to people, and what they require in order to heal. I pray it will also be a source of comfort to those who have been kicked aside, abandoned, and misunderstood because of their Lyme disease (and that would be just about everyone that I have ever spoken to who has Lyme, unfortunately).
You aren’t alone in this. My heart aches for you and believe it or not, there are doctors whose hearts ache for you, too. Because many of those who treat Lyme disease have been there, too, including some who participated in my new book.