Holiday season is a time of giving. Now that I’m in remission from tick-borne illness and able to give back, I find myself reflecting on what I wish I could give every Lyme patient. So many of you write to me seeking advice. I wish I could wave a magic wand and make you all Lyme-free. I wish I could give a treatment protocol that works for everyone, but no two cases are alike, so what works for me might not work for you.
Other gifts I’d like to provide are more feasible, even if not directly from me. If you’re a family member or friend of a Lyme patient, you may be able to make their journey a little easier with one or more of these gifts:
Hope: When you’re bedridden with fluctuating symptoms, experiencing Herxheimer reactions, and feeling like you’re taking one step forward and then two steps back, it can be hard to have hope. People were always telling me to look for the light at the end of the tunnel, but that tunnel was long, dark, and winding. With proper treatment, adjunct therapies, time, patience, and a reframing of my needs, I was eventually able to move from bedridden to thriving. Hold faith for Lyme patients, especially when they can’t hold it themselves.
Validation: Patients with tick-borne or other complex or invisible illnesses just need to be believed. By doctors, by family, by friends, by anyone who hears their story. They are all too often dismissed because their symptoms are difficult to see or drag on for a long time. This is why my book One Tick Stopped the Clock is dedicated “to the patients who need to be heard: I believe you.”
Compassion: Patients need to be heard, and they need others to be kind. With the exception of medical practitioners, they’re not looking for anyone to “fix” their illness. Messages that start with, “You should try…” or “You really need to…” are harmful, not helpful. Instead try, “That sounds really hard” or “I’m so sorry you’re going through this.”
A listening ear: Sometimes patients don’t need you to say or do anything at all; they just need someone to listen. I wish I could connect with all the patients who write to me. I simply don’t have the bandwidth, but I hope that others in their lives can lend the open, non-judgmental ear that I’d like to. Patients, I also recommend that you connect with GLA’s Peer-to-Peer Support Program!
An LLMD: It can take years to get diagnosed with tick-borne illness, because many medical practitioners aren’t Lyme literate. I want every Lyme patient, or possible patient, to have access to a good Lyme Literate Medical Doctor (LLMD) who can diagnose and treat them effectively. You can find one in your area through GLA’s Healthcare Provider Search or, depending what state you live in, you may be able to connect with one through GLA’s partner Ravel Health.
Funds: Tick-borne illness is expensive. Many patients are not able to work. I was just starting my independent post-college life when I got sick, and found myself fully dependent on family, terrified that I’d never be able to support myself again. On top of the physical and emotional toll of illness, loss of income can be devastating. In many states, patients face an uphill battle getting insurance coverage for long-term Lyme disease treatment. Out-of-pocket costs can be exorbitant and prohibitive. If you know someone battling tick-borne illness, please consider starting a fundraising page for them, just as you would for someone with cancer.
Practical support: In addition to emotional and financial support, patients need help doing tasks that were otherwise easy for them when they were healthy. Offer to pick up groceries or medication, make a meal, or provide childcare for a few hours. Even running a quick errand for a patient can save them precious energy.
Agency: Most Lyme disease patients were fully functional before they got sick, whether they were kids in school or adults leading independent lives. So much of their agency is stripped away by illness. Don’t take more away by making decisions for them or assuming what they need. Instead, simply ask. Remember that the reason they can’t do certain things is because they’re sick, not because they don’t know how.
A hug: I wish I could reach through the computer and give every tick-borne illness patient a hug. If you know a patient, please give them a hug for me. Actually, make it two.
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