by Jenny Lelwica Buttacio
Posted 6/27/19
We’ve all heard the saying before: Lyme disease is an invisible illness. Which means most people can’t tell how much we’re struggling by merely looking at us.
We’ve mastered the art of smiling despite being in pain, pushing through our fatigue, and showing up to events and outings, even when it’s to our detriment. Rarely does anyone see the painstaking measures we take to conserve our energy before we interact with others, or the hours and days it takes to recover from a day or evening out with friends, family, or coworkers.
When those around us can’t visibly see that we are ill, they may become doubtful that our symptoms are as severe as we say they are. Suffice it to say, we’ve all encountered those types of people — skeptics who question whether Lymeis real, or if we’re genuinely sick at all.
The question becomes, when it comes to the naysayers in our lives, should we spend our precious time and energy on educating them, or is it in our best interest to walk away? Below are six types of skeptics you’re likely to encounter when navigating Lyme disease (or other invisible illnesses like fibromyalgia or chronic fatigue, for that matter), plus tips from people who have been there on how to navigate these tricky situations.
1. The Skeptical Doctor
In most cases, you’ll probably need to work with multiple medical providersthroughout your recovery from Lyme disease or other chronic illnesses. While it certainly would be a welcome change if every healthcare professional understood the nature of chronic Lyme disease, the reality is that’s not likely to happen anytime soon, and it’s easy to become discouraged by the medical system.
“One of the primary reasons you may feel frustrated is because you have an expectation of a system to provide you with a type of care that, ultimately, it’s not designed to deliver,” says Dr. Bill Rawls, Medical Director of RawlsMD and Vital Plan. “The modern medical system is set up to provide acute medical care, which often consists of drugs or surgical procedures. So when it comes to the treatment of chronic conditions, the best tool many healthcare providers have to offer is medications that may help address the symptoms, but don’t resolve the underlying cause.”
Time is a key factor here, too. During a typical doctor’s appointment, a physician has only approximately 15 minutes to review your lab tests (which may not yield conclusive results), diagnose you, assign a diagnostic code, and provide treatment options. Many healthcare providers find themselves caught between not having enough time to problem solve and not having the tools to help you, explains Dr. Rawls.
Ultimately, most doctors don’t understand or are skeptical of illnesses like chronic Lyme, fibromyalgia, or chronic fatigue syndrome, and thus prefer not to treat them at all. If you ask your doctor to do more than he or she is capable of doing, you’ll both walk away frustrated.
So how can you make the most of your time with a primary care provider (PCP) or specialist even if they don’t understand the nature of Lyme disease? Here are a few suggestions:
- Consider using words like “persistent” or “ongoing” to describe your symptoms associated with Lyme as opposed to “chronic.” Sometimes, a slight change of wording can help a doctor better understand you’re still not feeling well despite treatments.
- Understand that you will have a limited about of time to address your needs, so be specific about the goals you’d like to accomplish during the appointment.
- Be cordial, even if your doctor is skeptical about Lyme. “You may actually know more about Lyme disease than your doctor, but never try to ‘one-up’ them with your knowledge,” advises Dr. Rawls, who’s been on both sides of the exam table as a physician and a chronic Lyme patient. Generally, that isn’t productive to your situation.”
- Ultimately, remember that you’re in control of your health. If your physician can’t help you, think about getting a second opinion.
2. The Doubting Friend
Alexandra Moresco was diagnosed with Lyme disease two years ago. While she was aware of the controversy surrounding Lyme disease, she hadn’t encountered skepticism firsthand.
But last year, things changed when Moresco shared her personal story of contracting the tick-borne infection with a friend who was a medical professional. She mentioned that she had never noticed a tick bite and didn’t develop a bull’s-eye rash, which made getting a diagnosis more challenging.
Moresco’s story was met with skepticism, and her friend began to recite the outdated guidelines from the Centers for Disease Control (CDC) to her. That included the false notion that a tick needs to be attached for 24 hours for it to transmit an infection, and that if Moresco hadn’t developed a bull’s-eye rash, she hadn’t contracted Lyme disease.
“It just amazes me how difficult it can be to share with people who are close-minded to what Lyme disease really is,” says Moresco. “This was a medical professional, and all I could think about was how many more people would go undiagnosed and suffer because of their ignorance.”
Normally, Moresco would seize the opportunity to educate a doubting friend and provide them with facts and resources. In this instance, however, she thought it was best to remove herself from the situation altogether. “I think illness really brings out the true colors of people and shows you the depth of your friendships in a positive and negative way,” she says.
Though some of her friends have faded away as she’s battled Lyme disease, Moresco has shifted her attention elsewhere. “I choose to focus on what I have gained — a truly amazing group of friends that also have Lyme through my work with Global Lyme Alliance,” she says.
3. The Leery Boss
Let’s be real: Some bosses are wary of all their employees, no matter what your personal obstacles or how well you perform. And those might be the ones you don’t tell about your chronic illness unless it’s truly necessary: It’s entirely up to you what you share with your employer regarding your health, and if the odds of finding support are slim, why give them one more thing to find fault with?
Other bosses might just need a little helping along. Amanda Losch, a licensed clinical social worker and Lyme disease patient, has found that educating her boss about Lyme disease has been a crucial part of diverting the skepticism she might encounter at various workplaces.
“Most people have heard the term, know a few facts — oftentimes, inaccurate facts,” says Losch. “I usually share about Lyme, how it presents, how it affects the body specifically, as well as the potential ways it could affect my job.”
By being upfront with her boss, Losch feels she establishes realistic expectations of her abilities, which sets her up for success. “Since Lyme is a disease that anyone can get, I’ve found most people are eager to learn more and engage in this type of a conversation,” she says.
Another approach is to offer some “official” literature, so the details aren’t just coming from you but also a second professional source. “Provide some resources such as the International Lyme and Associated Diseases Society website (ILADS) or a doctor’s note,” says Losch.
However, if an employer is unsympathetic to your situation and continues to be despite your best efforts, there are some additional steps you can take to advocate for appropriate support. Losch recommends the following:
- Know your rights under the Americans with Disabilities Act to seek reasonable accommodations to do your job.
- Understand your company’s resources. For example, you may be able to take advantage of an Employee Assistance Program (EAP), which allows you to access counseling services for emotional and vocational support. The best way to find out if your company offers this service is to ask your human resources director or check your employee handbook.
- Use self-validation to affirm that the symptoms you experience, the illness you endure daily, and the needs you have are real and valid.
- If your boss continues to invalidate your illness, consider speaking with your human resources department or discussing the situation with someone in upper management.
- Look for other ways to find support, such as friends, family, or online groups.
4. The Disbelieving Family Member
While you might expect to experience some skepticism from the occasional medical professional or even friends who don’t understand Lyme disease, it can be particularly shocking when the doubt comes from your family members — those who are supposed to love and support you unconditionally.
Jennifer T. came up against this roadblock. She had moved from her home into her parents’ house because she was no longer able to live on her own. Her parents had attended doctor’s appointments with her in the past, so Jennifer thought they were all on the same page regarding her diagnosis of Lyme disease. As it turns out, they weren’t.
“My parents were very angry with me those first few weeks at home. I remember them saying, ‘We don’t think you’re that sick. You’re depressed and burned out. We don’t know that Lyme is what’s wrong with you,’” she recalls, her safe place to heal beginning to crumble.
“I think people are programmed to think illnesses have a definite beginning and end,” says Jennifer. “My family couldn’t wrap their heads around the idea that this was not an easy fix or something that could linger for years. There was definite denial.”
To cope, Jennifer began reaching out to others who would understand what she was going through — the chronic illness community — and has found they’ve been able to help pick her up during the times she feels most down. Also, she realized that educating her family had more of an impact when it came from other people.
“I started including them during my doctor visits, so they would hear the same information I did. I thought if they heard it too, the questioning would lessen,” says Jennifer. “It still took a few years before they fully grasped everything. We struggled as a family for a long time.”
Now, Jennifer finds herself in a better place with her family, but she never lost sight of her goal — healing. “Your healing is way more important than who believes you. That has been a hard thing for me to realize,” she says. “Don’t lose hope no matter what doubters might be in your life.”
5. The Dubious Mental Health Professional
Maybe you’ve considered reaching out to a mental health professional to help you manage the ongoing emotional stress of dealing with a chronic illness such as depression and anxiety. But just like skeptical doctors, there can be mental health professionals who aren’t knowledgeable about Borrelia, let alone Lyme coinfections like Bartonella, Babesia, and Mycoplasma.
“When I sought support to cope with Lyme-related symptoms, my therapist told me, ‘You don’t have Lyme, because people with Lyme are really sick,” says Kerry J. Heckman, a licensed independent clinical social worker.
“As much as I would hope someone in my profession would not question a diagnosis or how sick a person is, it does happen.”
When cultivating a therapeutic relationship, the most important part of the process is trust, says Heckman, and the lack thereof can hinder your progress and be counterproductive. She recommends the following strategies for finding the right therapist for your needs:
- Call first. Most therapists will speak with you on the phone before making an appointment, which can help you feel out the situation and determine if the therapist is a good fit for you.
- Go prepared. Since most mental health professionals know very little about Lyme disease, consider sharing a list of symptoms and some challenges you’ve faced with other healthcare professionals during your appointment. You might also present a short article or two that speaks to what it is like to live with Lyme.
- Don’t commit unless you want to. If you feel like your therapist invalidates you and can’t grasp the severity of your situation, understand that you have the right to stop seeing that person and look for a new therapist.
- Shop around. Be aware that some people may need to see multiple mental health professionals before finding one that’s a good fit.
6. The Online Cynic
If you share your story or talk about Lyme disease on social media, you’ve probably crossed paths with these characters from time to time. They’re the people who insist that chronic Lyme disease is fake or a fad diagnosis.
Online skeptics may even cite a few studies and demand that you provide them with peer-reviewed, double-blind, placebo-controlled, clinical trials involving human participants. (Or, maybe that’s just me?) Regardless, it seems many of them are looking for a fight, and encountering them is likely to happen when you share your story publicly on the Internet.
“I have had people tweet me that Lyme is fake, and I’m crazy, which I just chalk up to pure ignorance,” says Moresco, whose Instagram account has more than 18,000 followers. “They can’t imagine it because they haven’t been through it, haven’t researched it, and are not educated on tick-borne illnesses.”
In cases like these, Moresco believes it’s best not to engage. “I find it better to walk away from those people than get into an online screaming match. I have come to realize that people with those views already have their ears shut.”
If you do decide to wade into the online waters and share your story publicly, Moresco says there are a few points to keep in mind to help fortify yourself and establish some boundaries:
- Make sure the information you share is vetted and factual to the best of your ability. Though there’s an abundance of graphics that float around online, not all of them are accurate, which can turn people off to learning new information.
- Ask yourself, does the benefit of publicly sharing your story outweigh the negative of running into some online haters? For Moresco, the answer is yes, and she’s passionate about educating the public, helping people obtain a diagnosis, fundraising, and advocating for the tick-borne disease community. If it’s “no” for you, know that that’s totally fine, too.
- Providing factual information online has a ripple effect — you empower others with knowledge, resources, and tools to be their own advocates, and the chronic illness community becomes stronger as a result.
- Bear in mind that cynics don’t just exist in the world of Lyme disease. You’ll find them in politics, religion, business, and any other arena where people can have differing viewpoints. Sometimes just remembering that you’re not alone when you come up against an online cynic can take some of the sting out of a bad encounter.
- If you decide to respond to a cynic, take emotion out of the equation and counter with accurate data and resources.
Moresco acknowledges that sometimes you have to turn off the outside noise when you just can’t tune it out.
“Personally, I mute and block people all the time. My timeline online is supposed to make me happy — if I have to stress about someone else bringing me down, it’s just not worth it!”
Her final piece of advice: Choose your battles wisely. “I know it’s difficult and easier said than done, but please do not let it bring you down or be the only thing you focus on,” says Moresco. “There is so much good in the world — choose joy.”
REFERENCES
1. Enforcement Guidance: Reasonable Accommodation and Undue Hardship Under the Americans with Disabilities Act. The U.S. Equal Employment Opportunity Commission
website.
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