Category Archives: Blog

TURN YOUR ANGER INTO ACTION

By Lori Dennis

I’ve been in the Lyme world for several years now. And if there’s one palpable emotion that reverberates throughout this community … it’s anger.

For reasons we all understand, Lyme sufferers and caregivers are not only confused, grief-stricken, and anxious. But we are also angry. Outraged might be an even more appropriate description. I hear it everywhere I turn.

The reasons for being angry are inexhaustible. As a mother whose son has been sick for a long time now with Lyme, as an author, speaker, and activist in the Lyme world, I understand and live with this anger every single day.

At the same time, I also know, without question, that anger can be personally destructive unless it is channeled into something actionable and substantive.

To deal with my own personal anger, I set out to write a book about our experience. It was my way of channeling my feelings of being overwhelmed. It was my way of helping to make sense of all that I learned, and providing a platform for others to tell their stories and share their perspectives. In short, writing was the best way I knew not to drown in my own indignation.

To best manage the overwhelming emotions we experience as both Lyme sufferers and caregivers, the healthiest thing we can do is channel our anger into action.

In the field of psychology, we call this sublimation – turning socially unacceptable impulses and feelings into ones that are more positive.

I don’t believe in repressing our anger because it absolutely needs to be felt. It is really to our own personal benefit to transmute it from a chronic feeling of negativity to positive and concrete endeavors. If we don’t, we can be subject to detrimental physical and psychological effects. Without a constructive course of action, anger can heighten our anxiety, deepen our depression, increase our blood pressure, and cause a myriad of other symptoms.

So, rather than letting anger eat us alive, we need to let it fuel our positive actions and provide us with the motivation, power, and drive necessary to get what we want and so clearly deserve.

The best strategy is to direct our energy towards a specific task––any task that can help you feel like you’re part of a solution. I recognize that it’s hard to do much when you’re feeling unwell. But remember, your actions don’t have to be heroic or superhuman. Any contribution you make will help you to feel connected to this mission for medical justice.

You can call or write to your local politicians. Bring an evidence-based Lyme article (or two) to your next medical appointment for your doctor to read. Join a Facebook support group so that you have an outlet to vent your anger with those who ‘get it’. Read blog posts on the subject to feel inspired and take comfort in knowing that advances are being made in the Lyme community. Start your own blog to share your experiences, tips, and learning with others. Follow the work of Lyme activists that you respect and trust. Channel your emotions into a creative endeavor––art, music, fiction, poetry––wherever your talents lie.

If you happen to have even more energy, volunteer at or even create a local event––an information seminar, a panel discussion, a town hall meeting––to educate the general public about Lyme disease, so that they won’t find themselves caught as unaware as you might have been. Creating the experience of community is the most healing action we can undertake.

Above all, let your voice be heard. Remember, our anger turned into concrete action will ultimately effect measurable change. Make an effort to connect with like-minded people who understand what you’re experiencing. This social connection will ameliorate your feelings of isolation, anger and despair.

There is always plenty of work to do in the Lyme world. Plenty of people to educate about Lyme awareness and tick avoidance. There are plenty of things to do that can propel us toward a new reality where all doctors are ready, willing and able to support us in our mission.

I hope that day comes soon. In the meantime, I will get back to the work at hand and channel my anger into continued advocacy for my son … and for all those who are suffering with this illness.


lori dennisOpinions expressed by contributors are their own.

Lori Dennis, MA, RP is a Registered Psychotherapist in private practice and the author of LYME MADNESS, named #1 NEW RELEASE in Immune System Health on Amazon. LYME MADNESS is available on Amazon. For more information, go to lymemadness.ca and loridennisonline.com. 

Join Global Lyme Alliance in taking action against Lyme disease. Click here to #BePartOfTheCure

Highlights from ILADS Boston 2017

by Jennifer Crystal

A Lyme Warrior’s take on ILADS Boston 2017

Tick-Borne Diseases: The Global Perspective

 

ilads

This past weekend, November 9 through 12,  I had the opportunity to attend the International Lyme and Associated Diseases Society (ILADS) conference in Boston. For four days I woke up at 5:30 a.m. so as to be ready for even the earliest sessions, where I spent hours learning about topics such as hypothalamic and pituitary function, extracorporeal photopheresis, and mycotoxin-induced immuno suppression. You would think so much medical jargon would cause a mental meltdown in a Lyme patient such as myself.  But the truth is, I loved every minute of it. Even without a degreed physician’s grasp of the science, I was able to glean the big picture of the conference, which was inspiring and empowering, and filled me with hope. I left feeling invigorated.

As a Lyme warrior and a writer, I strive to serve as a communication liaison between doctors and patients. I hope to make patient narratives accessible and meaningful to physicians, and I try to translate scientific material into readable layman’s terms. So, let me  share with you my overall takeaways from the ILADS conference:

Tick-borne illness is a world-wide problem

The theme of this year’s conference was “Tick-Borne Diseases: The Global Perspective.” Medical professionals and patient advocates came from 20 countries and 41 states including Alaska and Hawaii, and presenters spoke about the latest research and statistics from research institutions in North and South America, Europe, Africa and Australia. I learned about strains of  Borrelia—the bacterium that causes Lyme— in Russia and Iran. Brazil has its own exotic tick-borne illness that mimics Lyme, called Baggio-Yoshinaro syndrome. Worldwide, there is an urgent need for research and better testing, but the good news, according to Dr. Christian Perrone, Professor of Infectious and Tropical Diseases on the Faculty of Medicine Ile-de-France Ouest, is that awareness is spreading in both the public and medical sectors. There is some exciting treatment research being undertaken, too. Dr. Omar Morales, founder of Lyme Disease Mexico, is taking a hematological approach, looking at ways to remove bacteria from the blood.

We still need better diagnostic tests, but some advances are being made

Current tests for Lyme disease are unreliable. Dr. Brian Fallon, Director of Columbia University’s Lyme and Tick-Borne Disease Research Center, pointed out that the standard two-tiered ELISA and Western Blot test, which only has a 40% accuracy rate, was developed in 1994—10 years before there were iPhones, and years before we even had email. In his talk “The Good News About Lyme Research,” Dr. Fallon referred to testing as a “fishing expedition.” The ILADEF Power of Lyme Award recipient, activist Jenna Luché-Thayer, said that beyond faulty diagnostic tests, there are also problems with spotty, misleading surveillance; nebulous medical coding; misinformed policy; insufficient research; and, of course, politics. Researchers are working on new tests,  including one that is cellular based, and one that looks at DNA sequencing, which would allow doctors, in Dr. Fallon’s words, to “cast a wider net.” The DNA sequencing test can identify an unknown pathogen in several days. Moreover, scientists are working on vaccines, and are trying to genetically engineer mice to produce Borrelia-killing antibodies. “There’s lots of reason for hope,” Dr. Fallon said. “Science is bridging the great divide.”

We need an integrative approach to treatment

Patients often ask me, do you recommend taking antibiotics? Or going the natural route? I always respond that what worked best for me was a blend of Western and Eastern modalities, known as Integrative Medicine. Lyme is a bacterial infection, and antibiotics kill spirochetes. In my experience, homeopathic remedies, nutritional supplements, diet, and other therapies like cranial sacral or neurofascial processing are adjuncts only that can complement but not replace the need for FDA approved medication. The lectures I heard at ILADS reinforced the idea that the best approach to treating tick-borne illness is a holistic one, which incorporates antibiotic treatment, immune reinforcement, nutritional supplements, and lifestyle changes that support well-being and detoxification.

In his talk on eliminating infection, Andrew Petersen, DO, Chief Physician and Founder of  Whole Earth Medical Group, Utah, outlined a history of medical theories. The Miasma Theory, accepted from ancient times through the 1880s, postulated that dirty air, water, and bad energy cause illness. We then had Pasteur’s Germ Theory, which posited that specific microorganisms are the cause of specific diseases. Then there was the Béchamps Host Theory that illness is caused by a host having insufficient defense to pathogens.

Dr. Peterson called all of these theories “true, but not true enough; and wrong, but not completely wrong.” Modern Combined Theory looks not just at the pathogen, but also at the host. Infection is part of the picture, but so is the immune system’s ability to respond to it, which can be influenced by body toxin levels. The standard paradigm for treating Lyme disease is to try to eradicate the infection, but the Infectious Diseases Society of America (IDSA) and ILADS have long argued over how long that should take.

Conversely, Dr. Petersen contends, complete assessment of Lyme should include infection, immune dysfunction, and toxins (such as mold, mercury exposure, and toxins built up in the body and brain by both the infection and its subsequent die-off of infection). Other speakers also called for such an integrative approach.

We also need to look toward precision medicine, a model that customizes care for individual patients, especially since every case of tick-borne illness is different and there is no set treatment protocol. Understanding infection, inflammation, and autoimmunity will helps doctors to “make personalized medicine, so we can better treat our patients,” said John Lambert, MD, PhD, of the Dublin, Ireland Infectious Disease Clinic.

Everything from research to diagnosis to treatment should be patient-centric

Patients are the sick ones, so it only makes sense for their experience to inform research, diagnosis and treatment of tick-borne disease. As Dr. Lambert said, “We need to treat the patients, not the laboratory tests”—especially when those tests are so unreliable.

In her presentation “The Value of Using Big Data in Lyme Disease,” Lyme Disease.org’s‘s CEO Lorraine Johnson J.D., M.B.A., called Lyme “a researched orphaned disease.” The last federal treatment trial for Lyme was funded over 15 years ago. LymeDisease.org has created MyLymeData, where patients can register and provide information that can serve as a research platform to affect quality of care and policy change. Johnson said, “Patient registries are a research game changer…allowing people to act based on best past practice, not best available evidence.”

Another area that needs a patient-centric shift is health insurance. Medical treatment should be determined by physicians, not insurance companies. This was something Sheila Statlender, Ph.D., of the Massachusetts Lyme Legislative Task Force, worked hard for. The Task Force got an act passed in 2016 that requires Massachusetts insurance companies to cover long term antibiotic therapy for the treatment of Lyme. While the legislation has its loopholes, it’s a model toward more sensible statutes in other states. In her presentation “Update on Local Lyme Activism,” Dr. Statlender said that such legislation “empowers licensed physicians to use their clinical skills appropriately,” and that’s good news for patients!

Though there is still much work to be done, Lyme awareness and research have come a long way. Nowhere was that truth more evident than at the ILADS conference. Whether or not you know what the glymphatic system is or understand why chemokine CCL-19 remains elevated among patients with post treatment Lyme doesn’t matter. For patients, what matters most is this: there were 750 people at this year’s ILADS conference. That’s 750 researchers, doctors, and advocates on the front lines of tick-borne illness, working every day to make life better for patients like you and me.


jennifer crystal

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

Video: GLA CEO Scott Santarella’s speech at the 2017 GLA NYC Gala

Scott Santarella’s speech from the gala highlights GLA’s mission and some notable accomplishments in the past 12 months

Good evening. I am Scott Santarella, CEO of the Global Lyme Alliance. It’s an honor to be here tonight with all of you. To those of you who are back once again, thank you for your continued support. For those who are new, welcome to Team GLA.

A year ago, I introduced myself as the new CEO of Global Lyme Alliance and talked about the injustice associated with Lyme disease—the lack of disease awareness, inadequate diagnostics and limited treatment options for patients—all of which, we agree, are completely unacceptable!

I also shared with guests the responsibility we all share to do something when we see inequities in society, especially as it related to underfunded, underserved, and often stigmatized diseases.

And most unequivocally when the health of children and families are at risk, of which, all these, Lyme disease is very much guilty.

As we promised, and thanks in part to your support, GLA has been busy putting our words into action.

Over the last 12 months we have been tackling the injustices associated with Lyme disease with great success and measurable impact, best described by these numbers:

From 2 to 11

The number of countries from which GLA receives donor support, evidence our impact is worldwide.

From 22 to 50

The number of states, yes, all 50, from which GLA receives donations, proof positive Lyme is everywhere.

From a few hundred to 12,000

The number of elementary and secondary school teachers across the U.S. that have been given direct access, free of charge, to our Lyme disease prevention and education curriculum, further evidence of the need to educate nationally.

From 40,000 to 100,000

The number of children and families GLA has helped become tick and Lyme aware through our summer camp program offered at 56 summer camps in seven states and growing.

From $1 million to $2 million

The amount of grant dollars, since January 2017, GLA has committed to scientists focused on researching new ways to combat this disease.

From 2 million to 20 million

The number of media impressions GLA has had over the last 12 months through our social media platforms, educational programming, and awareness outreach efforts.

No doubt, we are all in this together … GLA is just getting started …

Recently, we hired a Chief Scientific Officer, Dr. Tim Sellati, who brings to GLA and our research-based mission 25 plus years experience in Lyme research, extensive disease knowledge and a track record of building bridges among scientists, clinicians, industry and government.

We held a successful fundraising event in Chicago in August which will become an annual event, and we have our sights set on major events in Texas, California, and Florida to further our national impact.

Lastly, we received more than 30 research grant applications this year … an indication of interest among the research community to help us solve the challenge of Lyme disease and reinforcing the need for resources to support their efforts.

This is the moment … now is the time to invest in GLA and our mission!

We have the leadership of our Board of Directors to set the strategic plan.

We have the commitment and dedication of our staff and volunteers to enact change.

And … we are all driven by a passion to erase the injustice for those suffering from Lyme and other tick-borne illnesses.

Together we will shift the paradigm of this disease from uncertainty, misunderstanding, and helplessness … to clarity, comprehension, and hopefulness … on a pathway toward a cure. Thank you for joining us, thank you for your support, and thank you for being part of Team GLA.

gla

Click here to donate to our year-end campaign #BePartOfTheCure

Dear Lyme Warrior…Help!

By Jennifer Crystal

Every couple months, Lyme Warrior Jennifer Crystal devotes a column to answering her readers’ questions. Here are her answers to questions she is frequently asked.


I found a bullseye rash, but my doctor thinks I should I wait until I have symptoms before starting treatment. Do you agree?

No. A bullseye rash is a telltale sign of Lyme disease. Symptoms can take weeks, months, or even years to develop, and by that point, the infection will be so advanced that it will require much longer treatment than it would have at the onset. With tick-borne disease, I always recommend erring on the side of caution. Had I been treated when I discovered my atypical erythema migrans rash (a blotchy series of red dots), my illnesses would not have become chronic and I would not still be dealing with them 20 years later.

In addition to being treated for Lyme, you should also be tested for co-infections. If your doctor is not a Lyme Literate Medical Doctor (LLMD), it’s important that you find one who is. You can find someone in your area through GLA’s “Find A Medical Professional” link.

What helps with brain fog?

Brain fog is one of the most frustrating symptoms of neurological tick-borne disease. It feels like your brain is filling with cotton. In addition to pressure and headaches, this feeling manifests in slowed thinking memory loss, difficulty coming up with words or a tendency to scramble word order. At my worst points, brain fog made it impossible for me to write, watch TV, or spend time on a computer.

For me, the biggest factors in eliminating brain fog were time and rest. I needed to give the antibiotics time to work. Due to Herxheimer reactions, my neurological symptoms got worse before they got better, but they did improve in time. You didn’t get sick overnight, and you aren’t going to get better quickly, either. As tough as it is, try to remember that you are a patient: your job literally is to wait, to give your body and brain the time they need to heal.

Sleep helps tremendously with brain fog, but insomnia is also a major symptom of neurological Lyme disease. Once I started getting more restorative rest—which I achieved through a combination of antibiotic treatment, sleep medication, and neurofeedback sessions—my brain fog decreased. It still flares up when I push myself by reading or writing for too long, watch an action-packed movie, or spend time in a crowded and loud environment.

You will have to learn your own limits, and be willing to abide by them. I avoid loud parties or concerts, and sometimes have to put down a book or walk away from a TV show even when I don’t want to. It’s hard to be strict with yourself, but it’s worth it to avoid brain fog.

My doctor wants to put a PICC (Peripherally Inserted Central Catheter) line in and start intravenous antibiotics. That’s a very scary thought to me. What are your thoughts on doing IV?

 While only you and your LLMD can decide the best course of action for your particular case, I can tell you about my own experience with a PICC line. When I was initially diagnosed—eight years after being bitten by a tick—my doctor had me try oral antibiotics for three months. My improvement was very slow. My doctor then recommended a PICC line, for two reasons. First, the intravenous antibiotics would kill the disease bacteria faster, and, second, they would also take pressure off my stomach since oral antibiotics can have a number of abdominal side effects associated with them.

Like you, I was very scared to try this option, but I’m glad I did. A nurse at my doctor’s office put the line in, and it didn’t hurt any more than having a regular IV inserted. I had a chest x-ray at a hospital to make sure that the PICC was correctly aligned with my heart, and then did my first dose back in the doctor’s office to make sure everything went smoothly. These steps helped me to feel safe. The nurse taught me how to infuse my antibiotics and clean my line so I was comfortable with the process before I left the office. He then came to my house once a week to change my dressing and take blood. You’ll want to make sure your doctor has all these steps in place for you, too.

Having a PICC line can be frustrating because you can’t get it wet. I wore a special sleeve when I did dishes, took baths, or had someone wash my hair a sink. You also have to think about covering your line when you’re out and about. Those issues aside, I sometimes forgot I had the PICC line in at all. I used it for almost a year, and can say for sure that it made a positive difference in my recovery.

It’s important to know the risks associated with intravenous antibiotics, including the fact that some medications can cause gallstones (this happened to me). So be sure to talk through all the pros and cons with your LLMD, follow instructions carefully, and have a nurse come once a week. Having a PICC line can be very helpful but all safety protocols must be observed.


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Do you have a question for Jennifer? Email her at  jennifercrystalwriter@gmail.com

“And,” Not “But”: Taking Power Back With One Simple Word

by Jennifer Crystal

It’s all about perspective. Sometimes, changing the way you say something, can change the way you think about it. Writer Jennifer Crystal has some good advice for Lyme patients who need empowerment.

 
Recently a friend complained to me about a co-worker who also happened to be his brother. “He drives me crazy,” my friend said. “But he’s my brother, and I need his help with the business.”

“And,” I replied. “Not but.”

My friend looked at me quizzically.

“If you substitute ‘and’ for ‘but’, it changes the whole meaning of the sentence. It allows both clauses to be true, without being tied to each other. You need your brother’s help. AND he makes you crazy.”

I can’t take credit for this good advice; a therapist gave it to me years ago when I was wrapped up in conflicted feelings about my tick-borne illnesses. I was living with family, largely dependent on them and others, and I was wrestling with a lot of guilt. If I said something like, “My neighbor doesn’t get Lyme at all,” I felt I had to quickly add, “But he did run an errand for me, so I should be grateful.”

Though I was sidelined with a debilitating illness, I didn’t feel like I had the right to complain, because I was getting help and treatment. I added caveats because I felt bad saying anything negative when there was anything positive involved. I didn’t want to seem ungrateful, so I qualified that concern with “but”.

My therapist helped me to see that I was allowed to have both negative and positive feelings about a situation or a person. I could be sad, mad, and frustrated that I was sick. I could also be grateful that I was starting to make some strides in my recovery. By connecting those statements with “and” instead of “but,” I gave equal power to them both, instead of negating one with the other. Of course, sometimes we do need to use the word “but”; it is innocuous in a statement such as, “I tried to go to a movie, but it was sold out.” However, when talking about feelings for a person or situation, “but” implies guilt or shame for having those feelings, while “and” validates them. That can be empowering for a patient who is feeling not so powerful.

This trick can work for any adversity or strife, not just chronic illness. One might say, “That co-worker is so rude to me, but she’s helpful on this particular project, so I feel like I have to put up with it,” or, “My boyfriend can be so controlling, but he does pay most of the bills.” Statements like this show how powerless a person can feel, whether they are struggling with illness, a difficult work situation, or a bad relationship. Shifting “but” to “and” is a way to start taking power back.

If the co-worker is both rude and helpful, the person complaining can recognize the helpfulness as its own entity, which may free them to talk to their colleague about the rudeness as a separate issue. The person in the controlling relationship can appreciate her boyfriend’s financial support, and still have the right to talk to him about power struggles in the relationship.

“And” doesn’t solve problems, but it does help us to look at them clearly. It also allows us to have conflicted feelings without shame. For me, this shift in perspective took away a lot of the guilt surrounding my convalescence. I didn’t need to chide myself for feeling one way, and try to convince myself that I “should” be feeling something else. Instead, I could take ownership of all of my feelings. And that was a very liberating moment!


jennifer crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

In The Lymelight Episode 3

Welcome to In The Lymelight: a show about…well…Lyme Disease.

 

In the Limelight aims to bring humor and knowledge to an otherwise somber topic with biweekly expert interviews that include, yes, the “heavy” stuff, but also everything in between that is meant to make your day a little bit brighter. Hosted by fellow Lymie and alpaca lover Alex Moresco and self certified iced coffee sommelier Sarah Aiken: we hope you enjoy listening in as much as we enjoy talking.

In our third episode of In The Lymelight, we had the opportunity to sit down with Sarah Greenfield, RD CSSD to chat about something incredibly important to those of us with Lyme disease: gut health. Sarah is a gut health expert that studied under a LLMD and lives in the Los Angeles area. Sarah explained the basics of gut health, breaking sugar addiction, tips on how to heal your body if your medication is making you sick and how the gut is directly connected to the brain and truly rules our body.

While episode three is a tad bit longer than our normal half hour, Sarah provides copious amounts of factual information that can truly make a difference to those of us battling Lyme.

To keep in touch with Sarah Greenfield, RD CSSD, you can check out her Instagram and read her website.


Opinions expressed by contributors are their own.

For interview suggestions, information or just to say hi- you can connect with us on Instagram at @alitmoresco and @saraiken.

 

The Pressure of Platitudes: Patients Are Only Human

by Jennifer Crystal

As I wrestled through the darkest years with Lyme disease and its co-infections, there were times when I had to be brave…Now that I am in remission, I try to offer inspiration to other patients through my writing, and I’m grateful to hear when I’ve succeeded.

One of my creative writing students, a cancer survivor, recently wrote about a time when she snapped at a fellow patient. This was while they were both receiving chemotherapy. A man sat down next to her and attempted to make small talk.

Just wanting to be alone, my weary student made a nasty comment, and he left.

You would think she wrote about this exchange years after it happened because she felt bad about whatever she had said. In fact, she wrote about the experience because it illustrates an important point that often can be missed: patients are only human.

Patients of any serious or chronic illness frequently hear, “You are so brave!” or “You’re such an inspiration!” These statements can be true, and can be nice to hear. As I wrestled through the darkest years with Lyme disease and its co-infections, there were times when I had to be brave: when I got my PICC line in, when I was fighting doctors and insurance companies who didn’t believe me, when I underwent emergency gallbladder surgery. Now that I am in remission, I try to offer inspiration to other patients through my writing, and I’m grateful to hear when I’ve succeeded.

But there were also times when I wasn’t brave, too. Those times when I didn’t advocate for myself, times when I didn’t stand up to someone, times when I wanted to give in to the illnesses. There were and are still times when I am not an inspiration after all: times when I’m grouchy, times when I overreact, times when I snap at someone thoughtlessly. Times when I, like my student, am all too human.

No one can be all one thing all the time. Part of being human is being multi-dimensional. Therefore, blanket statements like “You are so brave!” and “You’re such an inspiration!” don’t capture the full patient experience. Especially when given without context—like when you say it to a cancer patient you’ve just met and know nothing about him or her. In this context such compliments seem disingenuous.

In her book Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties, Laurie Edwards writes, “I fear it’s too easy to lump together platitudes about those who are sick—that we are somehow stronger or better people for having endured pain or extreme obstacles; that because we’re sick, we’re martyrs and capable of serenely accepting challenges, setbacks and procedures without complaint.”[1]

Sometimes we are strong and serene and capable of enduring more than we ever imagined. But usually we withstand obstacles simply because we have no choice.

“Very often, illness doesn’t allow the luxury of courage; pragmatism and practicality dictate the extent of our fearlessness,” writes Edwards. “I take the medications whose side effects I hate because that’s all there is left to do. There is very little room for interpretation, inspiration, or intrepidness in these situations.” As a patient who Edwards interviewed put it, chronic illness makes us better sufferers, not better people.1

Platitudes can also put unintentional pressure on patients to live up to super-human expectations. They may think they have to put on a good face even when they feel awful, or that they have to be brave even when they are scared. Patients wrestle with how they “should” feel or look, especially when they hear that other well-intentioned but off-putting statement, “But you don’t look sick!”

Beyond negating how sick someone is feeling, such a  comment also makes them think they shouldn’t try to look their best when out in public so that people can see how sick they truly are. I can’t imagine the mixed messages model Bella Hadid must contend with, since it’s her job to look beautiful but also to show that she is suffering from Lyme.

So what is a healthy person to say to someone with a chronic illness? My first piece of advice is “ask, don’t tell.” Instead of telling the person what they are, ask them how they feel, both physically and emotionally. Are they feeling brave? Scared? Cranky? Let them know that they don’t have to put on an act for you.

Second, be honest with what you feel and see. If a patient has done something that you recognize to be brave or inspirational, by all means, let them know, but be specific. Say something like, “I think you were brave to look for a different doctor” or “That quote you posted about chronic illness really inspired me to better appreciate my good health.” This way, the patient knows your compliment is genuine. You’ll feel better giving it, and they’ll feel better receiving it.

Finally, remember that the best way to help someone is by empathy. Let your friend or family member know that instead of telling them what to do, how to feel, or what they are, you are simply there to listen and to be with them. Chronic illness strips patients of so much, but it brings to the forefront their humanness. Let the patient know that you, too, are only human, and that both of you walk that journey together.

[1] Edwards, Laurie. Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties. New York: Walker and Company, 2008 (41, 42)


jennifer crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

Team GLA – Wall of Fame Fundraising Photos

Special thanks to our Team GLA family for doing whatever it takes to support our mission to create change in the fight against Lyme disease!

How Pets Help Us Heal

by Kerry Heckman
#MyLymeLife

It’s a proven fact that pets help us heal. Just petting your animal all by itself is known to lower blood pressure. It will also release the relaxation hormone oxytocin in your body and decrease the stress hormone cortisol. Studies also show people with pets are less likely to feel lonely and more likely feel happier.   

My dog Scooter follows wherever I go. If I’m sitting on the couch, he’s lying there right next to me. If I’m in in the kitchen cooking, he’s standing there waiting for me to drop him some crumbs. On days when I’m in bed, he’s curled up by my side as close to me as possible. He’s like my little security blanket (who barks a lot).

I didn’t grow up with pets. In fact, I was scared of or indifferent to dogs for most of my life. It was my husband who wanted a dog. I felt like it would be a burden on our busy lives and too much work. Despite my hesitations, I started looking on the website petfinder.com, a site that matches shelter dogs with families. I quickly warmed up to the idea of providing one of these big-eyed furballs with a loving home.

When I came across Nolen’s profile he was eight weeks old and weighed only seven pounds. I’d thought about contacting the shelter about other dogs I’d seen on the website, but I never did.  Once I saw the darling white puppy with the two black eye patches, I immediately emailed the shelter. I was told that Nolen was ours. We changed his name to Scooter and he’s been our constant companion for nine years.

During the last three of those years, I’ve been really sick with Lyme disease.  I’ve loved Scooter from day one, but in these last three years, I’ve come to really appreciate on a new deep level the joy he has brought into my life.

It’s a proven fact that pets help us heal. Just petting your animal all by itself is known to lower blood pressure. It will also release the relaxation hormone oxytocin in your body and decrease the stress hormone cortisol. Studies also show people with pets are less likely to feel lonely and more likely to feel happier.

On my worst days, Scooter is the one thing that can make me smile. His silly little quirks, like spending ten minutes forming a blanket into a bed or running to fetch a ball and never bringing it back, always boost my mood. Every pet has a different personality and can make us laugh when little else in life can.

After I became ill, I left my full-time job for a part-time job. Now I’m home a lot more. Since my husband works full-time and we don’t have children, Scooter keeps me company and keeps me from feeling isolated. Even if he can’t talk, I know he’s always there. He also forces me to go outside when he needs a walk. He doesn’t know that I have a chronic illness, and his needs aren’t going to wait for me to feel better. Sometimes I have no energy left and it’s incredibly difficult, but at least it gets me out in the fresh air and moving my stiff muscles and joints.

Scooter allows me to care for someone other than myself. Sometimes I feel helpless like I’m not contributing, but pets are relatively easy to take care of and it’s one simple way we can give to something beyond our basic needs. Scooter needs to be fed twice a day and given a lot of love, which even on bad days is something I can handle.

It’s true that pets are highly empathetic. They can sense when you are sad or in pain. When I’m down, Scooter won’t leave my side. I don’t know how he knows, but he knows. If I’m crying, he licks the tears away from my face. I wish people were as sensitive to others’ feeling as he is to mine. Maybe then there wouldn’t be so much sadness among those fighting chronic illnesses, a community that often feels completely feeling invisible to society at large.

Scrolling through other Lyme patients blogs and social media, there are so many posts about our with four-legged friends. It’s clear I’m not the only one whose pet is my everything. When I walk through the door and Scooter’s face lights up, when he jumps up for a pat on the head, I forget about my illness, even if just for a moment.


kerry heckmanOpinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Words Heal. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

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