Learning to be supportive when your partner has Lyme disease
By Fred Diamond
The woman I love has been coping with chronic Lyme for many years. For most of the 11 years we’ve been together, I thought I was doing my best to support her.
However, I came to realize recently that her challenges went further than I had imagined.
My mantra was “pay attention and keep her stress-free.” Shortly after I met her, she told me she had Lyme disease. I knew that meant she was easily fatigued, often in pain, and sometimes anxious. But she also had good energy, was very funny and beautiful.
I also knew that she had dietary restrictions, which meant we had to find the best gluten-free pizza in town. I knew she was concerned about heavy metals which meant she did not eat fish which might have mercury. It meant she had beef and rice when I had sushi.
I knew she was concerned about going into the basement when we realized there was mold there.
But I had no idea about the challenges she faced with Lyme and the stress she was under until I decided to really understand what her life was like battling this insidious disease.
You see, I pictured her as beautiful, funny, warm, and kind. My family loved her. My friends were happy for me knowing that I had such an amazing, loving, and supportive partner.
But I would always wonder why she seemed guilty whenever I did something for her and why she would often say I was working too hard for her when I had so many other things to worry about.
So, recently I decided to go deep into her world to understand the Lyme life she was living.
And I recommend that all partners of people with Lyme do the same. It changed my life in ways I never could have imagined.
Seeking to understand her illness
First off, I went online and purchased a few dozen books on Lyme, chronic illness, and anxiety. It was eye-opening! I joined a half-dozen Facebook groups and signed up for mailing lists at LymeDisease.org and other care organizations. I also called everyone I knew who ever uttered the word “Lyme.”
And I was shocked at what I discovered.
I thought I knew everything she dealt with, but I learned it was a constant battle for her to stay on top of treatments, supplements, and relief tools. Many days, all she could do was try to eliminate the pain, remove the anxiety, and find relief.
Even though I thought I was on top of things, I did not have a clue why certain things were so important.
Here are some things I discovered.
She felt a lot worse than I ever imagined
In a loving relationship, the balance of care shifts. When one partner is struggling at work, the other steps in and maybe takes a second job. When one partner is fatigued, the other does the housework and cooks the meals. I came to learn that she often felt the balance was uneven. Since she was sometimes unable to do some of the chores, she felt that since I was devoting more time and energy to her it was not fair. It never once occurred to me that this was an issue.
I had never thought of her as a Lyme sufferer. I knew she had Lyme, but I never thought that was her identity. I always saw her as beautiful, caring, and funny, while she often saw herself as sick and was often in more pain than I ever knew.
I saw the anxiety and depression but never appreciated it. I always thought some rest and time would help. The supplements and herbals? I always saw them as merely vitamins, not part of a protocol. I had no idea that it took everything she had just to make it through the day, plagued by pain in her legs, or her neck, or her head.
We had mold in the basement after a leak. I didn’t realize how devastating mold can be for someone with Lyme. There are hundreds of thousands of people suffering from mold allergies. I now understand what mold can do and how someone who is susceptible can suffer from even a brief exposure.
Genes and heavy metals
We liked watching the “Finding Your Roots” show together but I was always watching for the aha moment or when they disclose the family member who was a slave owner. She was watching to see how the genetic matching might have affected the guest.
I would hear her talk about how genetic makeup may impact your body’s ability to detoxify. Who must spend a second of their life knowing about these enzymes and how they may or may not impair the detox? And that’s why she was always so concerned about copper, iron, zinc and the other heavy metals and how they can get in the way of your healing.
Letting healing take its course
I’ve come to realize that healing from Lyme is a personal, private, and sensitive process that only the person going through it can figure out. Hopefully there’s a good Lyme literate doctor who can help. For many, there are not. I’m amazed at how many doctors still do not understand Lyme.
I had often said that her health was one of my two top priorities, since I know it was her main priority. With my business background, I might have treated it like a business process. What are all the steps we need to do to get to healing? But it does not work that way.
As you let the healing take its course, you need to let the person going through it lead the way. They know their body; you do not.
No one has ever said they wanted to get Lyme. No one in their right mind would be thankful they have it. No one really wants to be a “Lyme Warrior,” But until acceptance comes in, healing is near impossible. I have come to realize that her recovery must be on her own terms and all I can do is educate myself and be as sensitive and available as needed.
Recovering from Lyme is a very personal process. It’s different for everyone.
How to be a better source of support
I didn’t know what healing meant until recently. As a spouse, all you can do is get educated, be considerate, and supportive where needed.
You can’t do it alone. It’s too overwhelming. Life’s overwhelming. Getting through the day even when everything is going your way is hard enough.
As a partner, you need to make the extra effort to understand your partner’s world and what they must do to make it through the day with chronic Lyme.
When I realized this, our lives changed for the better.
Fred Diamond lives in Fairfax, Virginia.