What Lyme Is to Me

People always ask, “What is Lyme?” and then Global Lyme Alliance asked me to share what Lyme is for me…so I decided on a word — frustrating. But in reality, Lyme disease is so much more.

Lyme is a million things.

• Lyme is missing out on your friend’s birthday because you can’t get out of bed.
• Lyme is spending more times in waiting rooms than anywhere else aside from work.
• Lyme is trying a new set of medications only for your illness to force you to the hospital.
• Lyme is spending hours on the phone with insurance companies, only for them to say no they won’t cover your doctor visit.
• Lyme is learning what an LLMD is, and finding out due to stigma some doctors don’t tell the public they treat Lyme disease.
• Lyme is having a hospital buddy so you aren’t alone waiting for your parents to come to the ER.
• Lyme is perseverance and finding out just how strong you are.
• Lyme is avoiding having to explain why you aren’t making it to someone’s event.
• Lyme is having a late-night wind up with three days of recovery.
• Lyme is friends telling you you should be a nurse because you know so much about medications and symptoms.
• Lyme is having a therapist have to tell you it’s OK to be angry at your disease.
• Lyme is thinking about what would life be like if you didn’t get this disease.
• Lyme is being terrified any time you see a small bug or tick crawling on your shirt.
• Lyme is loving the outdoors, but avoiding hiking because you are scared of a tick bite.
• Lyme is knowing sugar and gluten are bad for your disease and feeling guilty when you cheat.
• Lyme is trying all different supplements and natural medication until you find the right combination.
• Lyme is being overly excited about Lyme research on medications like disulfiram, Stevia and low dose naltrexone.
• Lyme is loneliness and feeling like you are a burden.
• Lyme is having a home care nurse at 25 years old to change your IV dressing.
• Lyme is getting connected to others in the Lyme community, because it helps you feel less isolated.
• Lyme is your life looking more fun on Instagram than it is in real life.
• Lyme is remembering mental health symptoms are common in many patients with Lyme.
• Lyme is resting all day Saturday and Sunday to be able to go out for a few hours with friends.
• Lyme is hours in the car with your mom going to the doctors.
• Lyme is relating to your great uncle about your home nursing services.
• Lyme is knowing you are going to offer therapy for individuals struggling with Lyme disease and other chronic illness.
• Lyme is having friends you don’t see for awhile, but when you do nothing changed between you.
• Lyme is having a difficult time determining if you should tell your new doctor about your Lyme disease.
• Lyme is a new doctor who met you for five minutes telling you that your Lyme disease treatment is “aggressive.”
• Lyme is doctors rolling their eyes in emergency rooms about your symptoms.
• Lyme is crying while listening to the song Jesse Ruben and Avril Lavigne wrote about Lyme disease because you feel like they understand.
• Lyme is when you feel hopeful when you see celebrities spread awareness about Lyme disease.
• Lyme is believing in miracles when you are given a scholarship for help with medical costs.
• Lyme is being thankful when Governor Andrew Cuomo donates money to Lyme disease research.
• Lyme is a fluctuation in weight on a regular basis and an inconsistent appetite.
• Lyme is having your boyfriend watch you sort your medications and asking how you know they work.
• Lyme is being one of the lucky ones because you have your family believe you and help support you.
• Lyme is being worried your flare one day is going to be the one that makes you quit.
• Lyme is having a few friends who have stood by you and you couldn’t live without.
• Lyme is going home to your parents’ house for the weekend to take a break from your life and to cuddle with your dog.
• Lyme is sometimes feeling as though people will thinking you are a faking being sick because you are high-functioning.
• Lyme is having 100 motivational Lyme quotes for when you are having a particularly difficult day.
• Lyme is your friends knowing you always have medications, band aids and tissues in your purse.
• Lyme is feeling guilty about the hundreds of empty orange pill bottles from your medications.
• Lyme is good days and bad days.
• Lyme is being embarrassed by how fast you can binge watch a show.
• Lyme is going through treatments that require a lot of trial and error.
• Lyme is losing your fear of getting your blood taken because you don’t have the choice due to regular lab visits.
• Lyme is the regular bills from labs often stating the lab is out-of-network.
• Lyme is being on payment plans for blood tests, IV antibiotics and allergy testing.
• Lyme is worrying how you are going to fit all your doctor visits into your full-time job schedule.
• Lyme is waking up early for blood tests so you don’t have to miss any work.
• Lyme is being worried when a friend or family is having weird symptoms that sound like Lyme.
• Lyme is talking to strangers on social media because they are fellow warriors and you may be able to help.
• Lyme is wanting to join a Lyme organization, but being too exhausted to attend regularly so you miss out.
• Lyme is initially being worried about your boyfriend not understanding your Lyme disease, and then finding out he watched under your skin to try to understand.
• Lyme is telling people ,“I’m lucky I live in Connecticut” because the doctor diagnosed you right away, but not realizing you may have been sick for years.
• Lyme is remembering the day your primary care doctor said, “You have Lyme disease, but after a few weeks of antibiotics you will be fine.”
• Lyme is struggling to remember your life before you got sick.
• Lyme is sometimes wishing you could give up and stay in bed all day.
• Lyme is wondering if where you are at now is “good enough,” and you should just deal with the lingering symptoms, knowing all too well the symptoms will come back if you stop now.
• Lyme is wandering if the doctor will ever tell you that you are in remission.
• Lyme is forgetting what if feel likes to wake up with no pain or symptoms.
• Lyme is spending more time in my pajamas then you would care to admit.
• Lyme is having a heating pad, ice packs, Epson salt and a weighted blanket to help with symptoms.
• Lyme is spending a lot of free time reading about Lyme disease and saving relatable articles on your computer.
• Lyme is being excited when your boyfriend wants to order in and have movie night so you don’t have to muster the energy to go out.
• Lyme is sleeping over eight hours a night and still feeling like you just fell asleep.
• Lyme is your mom pointing out the picture when you started feeling better last year after months of treatment.
• Lyme is scrapbooking your memories because you want to cherish everything while you can.
• Lyme is trying to write blog posts about Lyme, but being anxious it will make things worse or people would see me as weak.
• Lyme is worrying about how many medical bills you have to pay.
• Lyme is being embarrassed how often I order delivery from seamless, because I don’t have the energy to cook after a long work day.
• Lyme is using your lunch break to go to the doctor, have blood taken or call the insurance company.
• Lyme is having to pay out of pocket my Lyme specialist because they are afraid of using insurance companies as they have to follow to the CDCs treatment protocol.
• Lyme is your siblings never doubting you and doing whatever they can to help you.
• Lyme is smiling through the doctor’s visit and taking silly snap chats with your mom while waiting for the doctor.
• Lyme is trying not to complain because you know “others have it worse.”
• Lyme is being heart broken when finding out a friend or family member was diagnosed with Lyme.
• Lyme is trying to provide resources and guidance for others struggling.
• Lyme is restless nights and sleepy days.
• Lyme is struggling to catch your breath after a few flights of stairs.
• Lyme is sweating through your shirts and being too exhausted to do laundry.
• Lyme is extended family checking on you at holidays and having your back.
• Lyme is trying to remember how much progress you made, but being frustrated you aren’t cured.
• Lyme is sorting your medications on Sundays and having multiple M-S pill sorters.
• Lyme is being told you have an “inflammatory” disorder but they don’t know what it is.
• Lyme is crying over someone close to you being diagnosed with Lyme disease, but also…
• Lyme is unpredictable days and challenging symptoms that pop up at the worst time.
• Lyme is having so much empathy and compassion for those with chronic illness that others don’t understand.
• Lyme is being grateful for parents & family who never gave up on you.
• Lyme is knowing others aren’t as lucky as you are because you have support.
• Lyme is resilience and graduating with your master’s degree and a full-time job.
• Lyme is acknowledging this disease is part of you, but you still refuse to let it define you.
• Lyme is everything and nothing at all.

Lyme is wanting this to keep going so you all have the opportunity to tell your Lyme story too.

What’s Lyme disease like for you? Tell us in the comments.