Tag Archives: lyme caregiver

Saluting the Caretakers of Lyme Patients

by Jennifer Crystal

On Mother’s Day, I read a Facebook post that said “For the sake of equity, shouldn’t we show appreciation for mothers every day?” I agree. But if we’re talking equity, shouldn’t we also show daily appreciation not just for mother figures, but also for those who father, and those who offer familial support in any way whether they are blood relatives or not?

Last year for Mother’s Day, I wrote a tribute to the moms of Lyme. As I reflect this year, I realize that the people on the front lines fighting for support, validation, research, and treatment for Lyme patients are not just moms—they’re also dads, grandparents, aunts, uncles, siblings, friends, neighbors, coworkers, and support group members. This year, I want to salute them all.

Some patients may read that statement and roll their eyes, because they haven’t yet found the support they so desperately need. When someone is diagnosed with cancer, no one questions the diagnosis or tells the patient “I know someone who had cancer. They got over it,” or “You’re probably just depressed/anxious/lazy” or “You just need a better mindset.”

But Lyme patients hear these types of comments—these gross inequities—all the time, often from the people who are supposed to support them most. There are patients living with Lyme illiterate family members. There are patients shunned by their families. There are patients who lose close friends, patients who lose jobs, patients who get strange looks from neighbors. These patients need the same love and help that any sick person needs, but instead they are often dismissed and denied because their illness is said to be controversial.

I know how frustrating these reactions can be and how isolating they can make someone feel. I also know that patients don’t really have the  time or energy to fight for support from the people who are already “supposed” to be providing it. But support can come in many forms. On Mother’s Day and Father’s Day we also celebrate aunts and uncles, grandmothers and grandfathers, pet parents, foster parents, babysitters, and anyone who offers parental-style guidance. Similarly, Lyme patients can find support in unusual places. I’ve written often about friends who stood by me when I did not  have a diagnosis, even if they didn’t understand my illnesses, even if they lived across the country. They sent care in the ways they could: they called, they emailed, they wrote cards. They showed that they were with me, unconditionally, every step of the way.

There are so many other people fighting the good fight for Lyme, even if they aren’t in a direct caretaker role. For example, the classmate I haven’t heard from since college who donates to my Lyme fundraiser every year. Or the Facebook acquaintance who reaches out to say, “I don’t know you well, but I have been through a similar experience.” The patient in France who emails me to share her story. The husband of a friend who watches a video about Lyme because he wants to learn more.

It turns out, people do come out of the woodwork for Lyme, just in different and perhaps more subtle ways.

Then there are, of course, the actual mothers and fathers who stay up nights with their sick children—even when those children are adults—who go to doctors’ appointments, help with medical costs, prepare meals, participate in awareness events, start support groups and even advocate for legislation to get insurance coverage for patients. And there are the grandparents, aunts, uncles, siblings, and cousins who do the exact same thing, or who show support in their own ways, whether by offering their homes as a place of respite or taking patients on a short drive for a change of scenery.

So there is hope, and there is help. If you are a Lyme patient feeling unsupported, I promise that you are not alone on your journey. Support is out there; you just may need to look for it in unconventional places. Your neighbor, or that co-worker you hardly know, or someone in an online support group may understand your illness better than your closest relative.

And there is gratitude. To all the caretakers of Lyme, whoever you are, whatever role you play, I raise my (gluten-free, sugar-free, non-alcoholic) glass to you. Thank you for your hope, your encouragement, your support, and your love. We couldn’t do it without you.


jennifer crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

lyme caregiver

Care Versus Overcare: A Fine Line

by Jennifer Crystal

Well-meaning Lyme caregivers can easily cross the line from care to overcare. Here are some simple rules to follow for both patient and caregiver.

 

Recently a friend was going through a difficult time. When she confided in me, I offered her a non-judgmental ear and lots of hugs. I gave advice when she asked for it. Being there for her made me feel good. Indeed, as Doc Childre and Howard Martin describe in The Heartmath Solution, “care inspires and gently reassures us. Lending us a feeling of security and support, it reinforces our connection with others. Not only is it one of the best things we can do for our health, but it feels good—whether we’re giving or receiving it.” [1]

But then, as my friend’s problem became more serious, I became deeply worried about her. Her situation was on my mind often, and I started checking in with her in an overbearing way. I was anxious about her all the time. While my feelings came from a place of love and concern, I had crossed into the dangerous territory of overcare.

Childre and Martin define overcare as “a burdensome state…when care from the heart is bombarded by niggling worries, anxieties, guesses, and estimations from the head.” They caution it is “one of our biggest energy deficits, and it’s at the root of a lot of other unpleasant emotional states, including anxiety, fear, and depression.”

The line between care and overcare is so fine that it can be hard to distinguish the two. However, it’s important to be able to do so, to protect our own well-being and our relationships. This is especially true—and difficult—for Lymies and their caregivers.

While Lymies may take care by following doctor’s orders, we can have a hard time enacting self-care, because we are plagued by feelings of guilt and shame. Instead of being gentle and patient with ourselves, we spend time and energy wondering when or if we’ll get better, beating ourselves up for being sick, and worrying that we are burdens. I spent years doing this. I see now that I was in a detrimental state of overcare, which hindered my ability to get well.

Well-meaning Lyme caregivers can easily cross into overcare, too. Many work tirelessly to care for their children, parents, siblings, or friends who are sick. That much care is greatly appreciated, but can easily be taken too far, to the point where the caregiver gets burnt out. Once they hit that point, they’re not helping the Lymie or themselves. Moreover, when a caregiver over-identifies with a problem, getting too involved and worrying to the point that their own mental health is affected, the patient may feel smothered or guilty. Everyone loses.

So how do patients and caregivers negotiate this fine line? Here are some lessons I’ve learned along the way.

For Lymies:

  • Be a friend to yourself. Be as kind to yourself as you would to a friend going through the same thing. Would you make that person feel guilty or ashamed for being sick? Give yourself the love, care, and understanding you would give to someone else.
  • Give yourself positive affirmations. Instead of berating yourself, try out thoughts like, I’m doing a good job. I’m going to get through this. This is not my fault. Sometimes this disease is two steps forward, one step back, but ultimately I am moving in the right direction.
  • Establish a good support network. This could include a therapist, friends, family members, other patients—anyone who understands your situation, gives you the empathy you need, and can talk through your worries and concerns.
  • Take care of your mental health and your physical health. Any long term illness causes situational anxiety and depression, and neurological Lyme can make them worse. Personally, seeing a therapist and treating my anxiety and depression have helped me to physically heal from Lyme.

For Caregivers:

  • Give yourself breaks. Even if you are the primary caregiver of a patient, make sure you have other people who can fill in for you so that you can take time off.
  • Make time for fun. Don’t just take a break to shower or go to the pharmacy. Take yourself out for an ice cream cone, see a movie, or do an activity you enjoy. You are not neglecting the patient by doing this; you are recharging your own batteries so that you can continue to care for your loved one.
  • Have a support network. Have a therapist, friend, or family member you can talk to about the emotional toll of being a caregiver. Try to direct your worries to this person rather than to the patient.
  • Ask. Never assume that you know what a patient needs. Ask specifically how you can best help them.
  • Don’t smother. No one likes to be fussed over for too long. Depending on your relationship with the Lymie, establish a routine that’s comfortable for both of you: maybe you talk by phone briefly when the patient is feeling up to it; maybe you send one check-in text a day; maybe you stop by once a week for a quick visit.
  • lyme patientRemember, it’s about the patient. As a natural giver, this is one I struggle with the most. My instinct is to help, but I have to first be sure someone wants my help. I have to see if the concern I’m giving is about my need to show I care, or if it’s about the person getting the care they need.

For Both:

  • Remember the airplane rule. On a plane, you have to put your own oxygen mask on first before helping others with theirs. First and foremost, you must always take care of yourself.
  • Ask yourself: is this care or overcare? Keeping yourself in check based on the definitions above will help you to give healthy rather than detrimental care. Checking myself when I went into overcare with my friend helped me to be a better friend to her and to take better care of myself.

[1] Childre, Doc and Martin, Howard. The Heartmath Solution. HarperSanFrancisco, 1999 (159, 165).


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com