Dear Fluent, here is everything Lyme disease taught me. Love, Haley.

Battling chronic Lyme disease my entire adult life, I accepted the fact that very few people could truly understand my struggles. Of course, many have tried to put themselves in my (Alexander Wang) shoes, but unless you’ve endured the type of excruciating pain I have, there is an inherent limit to your ability to empathize. 

After undergoing a summer’s worth of blood infusions, ozone therapy, colon hydrotherapy, osteopathic manipulation and ultra-violet radiation, I finally decided to open up about my journey on social media. After debating for weeks whether or not to hit “post,” I was truly overwhelmed with all of the love and well wishes I received that day and for days and weeks to come.

I was particularly moved by all of the people who reached out, sharing similar experiences, one of them being a girl by the name of Haley Schwartz. Haley bravely opened up to me about undergoing intensive Lyme treatment in Germany, validating my pain and reassuring me that you’re never struggling alone. 

Extremely moved by Haley’s words, I immediately went to her page and read all about her battle with Lyme disease, Gastroparesis, Chronic Exertional Compartment Syndrome, a variety of Vascular Compression disorders... the list goes on. Wow. She is a true warrior. 

I’m a big believer in “the universe having your back,” and it’s no coincidence that Haley divulged her story just one short week before me. Without either of us even knowing it, Haley laid the groundwork for what proved to be one of the best decisions I have made to date. No two experiences are the same, but it’s comforting to know there is at least one person out there who understands you. And I mean really understands you.

So, thank you, Haley, for reminding me that empathy doesn’t have limitations. 

Keep reading for Haley’s top takeaways from her four-year battle with chronic illness. Just as she told me, her story deserves to be heard! 

You will have both good days and bad days. Sometimes more bad than good. 

It will be difficult to “plan your life,” both long and short term. Your body may be untrustworthy, but never stop making plans and setting goals. You have no other choice but to learn how to ride the unpredictable wave of chronic illness. 

With that, it's crucial to listen to your body. Only you know when you need to slow down or rest. On days you feel you can push yourself, go to that dinner, go to the beach, go for a walk, hang out with your friends. You don’t know when your next good day will come. Embrace your “good days” to the fullest. Be grateful for the good days that will enable you to endure the bad ones. 

Be your own advocate. 

Never underestimate the power of your intuition. YOU know your body best. You may meet with 10 doctors who dismiss you and your symptoms, but the 11^th doctor could be the one to put all the pieces together and make that "magical" discovery. Dealing with chronic illness is like solving a puzzle. One doctor’s appointment may not seem beneficial, but it can lead you to the next doctor. And the one after that. And the one after that. 

Find the one thing that gets you out of bed. 

When you have a schedule full of treatments and doctors appointments, it is easy for you to go down a dark path of hopelessness and lack of motivation. I urge you to take one hour each day to disconnect — take a Pilates class, practice meditation or listen to a podcast. Whatever it is, there can be joy found in every day, no matter how badly you feel. 

Personally, my one hour of “me-time” is going to a group fitness class. While on most days, it feels impossible to physically get myself through a workout, I always feel dramatically better afterward. Chronic illness can be isolating, but fitness has allowed me to build very strong relationships and a powerful sense of community and belonging.  

When I’m in that room, I am no longer the “sick girl.” I am just Haley. 

Mind over matter.

Give yourself permission to feel all your emotions, but never stop fighting the fight. Feeling sorry for yourself will not change your situation. Mindset plays a HUGE role in getting healthy. You need to learn how to pick yourself up off the floor and just keep going. 

Naturally, my perspective on all of this has ebbed and flowed. Living in this constant state of sickness and pain, all while living with the immense pressure to make myself and my loved ones proud, has taken a toll on me in ways words can’t explain. But everything has a silver lining. Things that used to weigh on me heavily are now no big deal. I’ve learned to go through each day not sweating the small stuff, feeling way more relaxed and care-free than ever before. 

Social media always lies. 

Whether with thousands of Instagram followers or your closest friends and family, it is so important to let people in on what you’re going through. Do not hide. Connect with others whose experiences can help you. Remember that Instagram is a false reality. 

I can't even count the number of people who used to say to me, "You live life in Miami; I'm so jealous." All they saw were the fake highlights of my life plastered on Instagram. Like everybody else, I would post photos with celebrities at work events, getting first place in a marathon, going on boats, eating at glamorous restaurants, etc. What people didn’t see was that a few short moments after each and every post made it to my grid, I would be doubled over crippling pain.

Absolutely terrified to open up to my followers, I didn’t post anything about my four-year-long chronic illness until a few short months ago. I could have never imagined the overwhelmingly positive reaction from people from all walks of life. The hundreds of texts and comments filled with such kind words brought me to tears.  

My post proved to be not only healing for myself, but also for those reading it who struggle with the same thing or something similar. I connected with so many people I had never even met (even Daisy Kent from the Bachelor!), with whom I was able to provide insight and advice in guiding them on their own chronic illness journeys. I offered them tips and direction on tests to get, doctors to see and treatments to trial. My friends in medical school were able to take this newfound knowledge and use it to help their future patients. 

Through my post, the people who assumed I was living a perfect life in Miami could now see my reality and how deceiving Instagram really is. I hope people can learn from my story and remind themselves not to compare their lives to what they see on their screens. You never know what people are going through, so always be kind. 

It is okay to prioritize yourself. You do not owe anyone an explanation.

No one knows your body better than you. If you need to cancel your plans and rest because you are having a bad flare-up, do not feel guilty. Do not let people pressure you to make plans. Learn to establish healthy boundaries. Do not push your body to the point where it sets you back. A few hours out is not worth being bedridden for days afterward. As hard as it is not to take other people’s judgments to heart, you have to prioritize your health as best as you possibly can. 

Try anything and everything for treatment. Do not compare your case to another patient’s. 

No two Lyme patients are the same. What works for one person may not work for you, and vice versa. Try a treatment that wasn’t successful on somebody else because it could be a game changer. Do not rule anything out just because someone said so or it didn’t work for them! 

Don’t give up on medication or treatment after a few days or even a few weeks. Your body has been fighting chronic illness for a while — it takes time for it to begin to respond to therapy and for you to notice a physical difference. Be patient with yourself. Give yourself grace. 

Your path won’t be linear. Don't give up!

Never take no or the first  “solution” as a definitive answer. 

At just 20 years old, I was told by dozens of specialists that if I ever walked, ran or worked out again, I would need my legs amputated. One month prior, I placed first in a half marathon. Staying active was everything to me. I would not accept being sedentary for the rest of my life. 

Again at 22, I was told I would need surgery to have my colon removed. This would have dramatically altered my quality of life. Do not take these “solutions” as final answers. ALWAYS get a second, third, fourth and fifth opinion!!! After tons and tons of research, I found an alternative plan of action through a Facebook group for my leg condition. I flew to Wyoming three times to get treatments only given by a few doctors in the world.

Thankfully, I am now able to exercise safely and pain-free. Had I accepted the “answers” from the first 10 doctors I met with, I would be in a completely different place than I am now. 

Real friends stick around through the hard stuff. Not just the good. 

Before opening up on social media, I felt like I needed to suffer in silence so that I would appear “normal.” I became so skilled at hiding my health issues that nobody even realized something was wrong in the first place. I managed to graduate college, stay active and work a 9 to 5 job throughout all the pain, procedures and hospital visits. 

I only let a handful of people in my life know the severity of my situation. Whenever I would open up to somebody outside my inner circle, I'd be met with pushback like, “But you don’t look sick? How can you workout? Can’t you just take medicine and feel better?" Since chronic Lyme is an invisible illness, and I don’t look like a “sick person” on the surface, it's very difficult for people to understand my situation… especially when I barely understand it myself. 

As hard as it is, it really is crucial to talk about what you are going through and feeling with your friends.  Tell them how they can best be there for you and support you. Through this journey, you’ll quickly learn who your real friends are. You’ll see how few people take the time to put themselves in your shoes and how amazing the people who do, turn out to be.  

My “friends” who I thought would be there for me weren’t, and those who I never expected to be, ironically showed up the most. That being said, it’s important to recognize that some people in your life may not know what to do or say. Give people grace who do have good intentions and are trying to be supportive in the best way they know how. 

Embrace resilience. Accept your body. Be kind to yourself.

As challenging as it’s been, my chronic illness has taught me some of life’s most valuable lessons. 

1. 1. Optimism and empathy are key. 

2. 2. Grieving your “past life” does not help you heal. 

3. 3. Mindset is everything. 

I'm not sure why I was dealt these cards or why so much had to be taken from me in the process, but the universe truly works in the most painful, yet beautiful ways. Everything does happen for a reason, and maybe my “reason” is being a resource for others I so desperately wished I had. 

I am truly proud of the person I have grown into today and am constantly reminded of my physical and emotional strength. I am excited to re-discover the Haley who has been lost for so long. There’s a long journey ahead, but after four years of saying no, I can't wait to start being able to say yes to life again.