Discover strategies for effective communication with doctors, tips for managing relationships after illness, and ways to ease back into life post-recovery.
Every few months, Jennifer Crystal devotes a column to answering your questions. Do you have a question for Jennifer? If so, email her at lymewarriorjennifercrystal@gmail.com.
How can I get doctors to listen to me so I can actually get help?
When you’ve gone from doctor to doctor with no answers—or worse, find yourself invalidated or gaslit—it can be hard to keep trying with new practitioners. You may come to appointments feeling or acting defensive, which can put a new physician off. You also have so much you want to share with a potential new practitioner, but so little time, especially if the appointment happens to be covered by insurance and you are only allotted 15 minutes or so. Here are some tips:
- Do your research to make sure you’re seeing a doctor who could truly be a good fit for you. Read reviews, talk to others who have seen them, and make sure they have experience treating Lyme disease.
- Write a one-to-two-page document with your symptoms, when they began, a list of treatments or supplements you’ve tried or are currently taking, and highlights of your medical history. Though you of course want to share all of your story—and the emotion involved in it—what a doctor really needs to hear in order to help you are the facts of your case. The Lyme Wellness Initiative offers a downloadable form to guide you. If the doctor has a portal, you can send them the information in advance to save time at the appointment.
- Come with a list of questions. Decide beforehand what you want to ask the doctor and bring a notebook to write down their answers.
- Be open and respectful. Rather than listing grievances of past doctors, or telling the doctor what you have and what you need, show them that you are open to hearing what they have to say (which, in turn, may help them be more open to you and gives you a better chance of engaging in collaborative care).
- Bring a friend or family member. This person is not there to make a doctor feel ganged up on, but simply to quietly remind you that you have support in the room. They can help take notes and ask follow-up questions.
- Be persistent. If you still aren’t feeling heard by a particular doctor, try another one.
How do you negotiate relationships—of any kind—when you can no longer give what you used to before you got sick?
Whether it’s a family member, a friend, or a spouse/significant other, illness can cause a wedge in relationships. Even if the person is understanding and supportive, the situation is still challenging for both parties. The other person wants to help, but also may have new stressors like increased financial or familial obligations, and they are likely missing some of the things you used to do together. You are probably missing those things, too, and may be wrestling with feelings like guilt, shame, or sadness. You may feel like a burden, even though you are not. I know exactly what this all feels like. Here are some tips that helped me along the way:
- Communicate openly. Ask the person what your illness is like for them, what’s hard for them, and what they need from you. Share your own feelings and needs. It helps to use “I” statements so the other person doesn’t feel accused of something (for example, “I’m feeling overwhelmed by household chores” comes across differently than “You can’t do anything around here anymore!”). If this is a hard conversation to have, try writing letters to each other.
- Allow your feelings. It’s okay to feel shame, sadness, guilt, frustration, anger, or any other “negative” emotion you may have. Bottling those feelings up, or telling yourself you shouldn’t have them, will only lead to resentment. Give yourself space to grieve what has been lost.
- Brainstorm together ways that things you once provided can newly be met. This might mean having someone come in a few days a week to help around the house, or it might mean getting a part-time, remote job to contribute some income even if you can no longer work full-time.
- Consider new things you can do together that will still allow you to spend time and have fun. Instead of your weekly run, you might play a quiet board game.
- Think about what the person really values in your relationship and how you might still be able to give that. Perhaps they value the way you lift them up when they’re down, or the way you listen thoughtfully, or the way you keep confidences. These things don’t take much physical effort and can still be given from bed.
- Give it time. You may not be able to give in certain ways now, but that may not be forever. With time and appropriate care, I can now give much more to relationships than I could when I was bedridden.
Now that I’m feeling a little better after Lyme, rejoining life feels like an uphill battle that is just as daunting as the decline. Any tips?
I completely understand this feeling. Re-entry is a bit like reverse culture shock; you’re stepping from the “kingdom of the sick,” as Susan Sontag put it in Illness as Metaphor, to the “kingdom of the well,” but you’ve gotten so used to life in the former that you are a bit intimated by life in the latter. This is probably a good thing, because it means you recognize there will be challenges and you’re looking for ways to prepare for them.
I was not as smart the first time I went into remission. I dove way too quickly into my previous life—working, living independently, socializing—and relapsed within three months. Here are the lessons that experience taught me, which have now helped me stay in remission—ever-improving—for more than 15 years:
- Go slow. I do not recommend diving headfirst into everything you want to do. Instead, pick one thing—say, working part-time—and see how that goes. If, after a while, that seems okay, consider adding more hours. Do the same with social engagements, moving out on your own, etc. I recommend not overwhelming your body with too many changes at once.
- Pace yourself. Even if you are feeling well doing things you haven’t been able to for a while, think of re-entry like training for a marathon. You want to slowly build stamina and muscle, which in addition to spurts of activity also requires adequate time for rest. I’ve learned to stop while I’m ahead, before I’m physically exhausted or neurologically overwhelmed.
- Say no. You may be so excited to re-enter the world of the well that you forget your own limits (I certainly did!). Saying no to outings that would exhaust you, or taking time to rest instead of helping a friend move, will allow you to do more in the long run.
- Talk to your health care provider. Discuss your goals with them and talk about ways to slowly achieve them so that you can move from feeling “a little better” to “a lot better” instead of “not well at all.” Ask how they can tailor a maintenance protocol for you that can help support your body through this positive but nevertheless stressful transition.
- Practice self-care. Your body still needs all the good self-care it did when it was sick: good sleep hygiene, exercise as tolerated, proper nutrition, adequate hydration, time for fun.
- Seek support. This is exactly what you did by writing to me with this question, so you’re off to a great start! You also might consider talking with a therapist who can help you through this transition and/or asking for support from friends and family.
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