Archive for the ‘Lyme’ Category

Chronic Lyme & the CDC

https://www.globallymealliance.org/blog/chronic-lyme-is-getting-more-validation?

Chronic Lyme is Getting More Validation

byJennifer Crystal October 23, 2023

The narrative around chronic Lyme disease is shifting, bringing more validation to those who have been battling for recognition of their illness. Despite the progress, there is still work to be done.

The narrative around chronic Lyme disease is shifting. If you have chronic Lyme, you might read that sentence and roll your eyes. I understand if you do. For decades, Lyme warriors have been battling doctors, friends, family members, insurance companies, and the government for validation of their illness. For validation of themselves.

Yes, of themselves. Chronic Lyme is not, in fact, an identity, as was erroneously and hurtfully purported in a 2019 New York Magazine “The Cut” article that made the rounds again this summer. As I explain in my recent “What it Means to Live with Chronic Lyme Disease” blog post, chronic Lyme is a clinical diagnosis of persistent Lyme disease symptoms that must be made by a medical doctor. It is not a diagnosis of exclusion, a chosen diagnosis, or a chosen identity. No one wants to be a Lyme warrior, but when they’ve been sick for months or years due to delayed diagnosed, complications with co-infections, immune dysregulation, treatment-resistant infection, or other factors, Lyme disease does become part of their identity. Thus, when their illness is denied, it feels like part of themselves is denied.

I continued to sometimes wrestle this denial even after I found Lyme literate doctors, my friends and family became Lyme literate, and I twice achieved remission. I still had to fight for validation from insurance companies, new doctors, and, often, the general public, whose narrative about Lyme had trickled down from what they heard from the government or in the news. Chronic Lyme was still a contentious term, one that I had to be careful to avoid depending on my audience. In articles, the term was often written in quotation marks, suggesting that it wasn’t real. Articles like the one in “The Cut” and others debated the veracity of the illness.

This was a reality for so long that many people don’t realize is changing. I was upset when “The Cut” article got shared on social media again this summer, because it’s old, fake news. In 2023, chronic Lyme hasn’t fully gained the acceptance the Lyme community would like, but the needle is absolutely shifting.

Take, for example, the recent Boston Globe article “Chronic Lyme Disease Research Gets Big Boost.” The title alone is cause for celebration, especially from a publication that has previously run articles questioning chronic Lyme or using alternate terms for it. (In fact, my first big Lyme-related publication was an op-ed in response to a Boston Globe piece almost a decade ago). In “Chronic Lyme Get a Big Boost,” the word chronic is not in quotation marks. It’s just stated as a name of a disease that desperately needs—and is finally getting—research attention. The article goes on not to question chronic Lyme, but to discuss its possible causes, which are being studied by the NIH.

While the article does loop chronic Lyme patients under the Post Treatment Lyme Disease umbrella—when the inverse is actually true—it doesn’t use the PTLD term exclusively, but instead uses liberally and without question the terms chronic Lyme and long Lyme. The article quotes, “In announcing the new grants, the NIH said it hopes that broadening scientific understanding of what causes chronic Lyme might help researchers decipher similar mysteries with other infection-associated chronic illnesses, like long COVID and myalgic encephalomyelitis, formerly known as chronic fatigue syndrome.” Thanks to long COVID, other long-haul illnesses like chronic Lyme are finally getting the attention and validation they’ve needed for too long.

A big part of the chronic Lyme debate has always been whether Lyme can cause persistent infection following a short course of treatment. Over the years, we’ve watched the science catch up to the lived experience of chronic Lyme infection. And while we haven’t heard a definitive “chronic Lyme is caused by chronic infection” from important stakeholders, we are hearing that infection is one of the possible causes of chronic Lyme, and that researchers are studying other causes like altered neural pathways, immune dysregulation and chronic inflammation.

To me, there are two important shifts here: the first is that chronic infection is being accepted as a legitimate cause of persistent symptoms. The second is that the other options are not necessarily being considered instead of persistent infection—when for years the pat line was, “chronic Lyme infection doesn’t exist, so it must be something else”—but possibly in addition to infection. In other words, the causes of chronic Lyme disease are probably not mutually exclusive.

This is evident in the updated wording on the CDC website, which says, “The state of the science related to the persistent symptoms associated with Lyme disease is limited, emerging, and unsettled. Additional research is needed to better understand how to treat, manage, and support people with persistent symptoms associated with Lyme disease.” While the CDC isn’t using the term chronic Lyme, they are validating the experience as well as the need for better research to understand it. Again, the needle is moving in the right direction.

With Lyme treatment and recovery, everything happens in baby steps (sometimes forward and sometimes backwards). We want to get immediately better, but when you’ve been sick for a long time, there isn’t a quick fix. We appreciate little progress as we work towards a larger goal of wellness. When it comes to validation of chronic Lyme disease, I similarly appreciate the progress that is being made, knowing there is still distance to be covered. I believe we Lyme warriors have reason to hope.

***

Writer
By Jennifer Crystal

https://www.globallymealliance.org/news/the-long-shadow-of-lyme-infection-cdc-update-sparks-new-conversation

Chronic and Persistent Lyme Symptoms: CDC Update Underscores Progress

by Global Lyme Alliance on October 30, 2023

The CDC’s update on Lyme infections is a shift in tone on the long-lasting symptoms and challenges faced by individuals. As acceptance of ‘long COVID’ and the concept of persistent illnesses grows in familiarity, the CDC’s update on Lyme disease is no exception.

In the evolving landscape of post-infection ailments, the CDC’s recent update delves into persistent symptoms following Lyme infections. This exploration underscores a crucial reality: infections can cast a long shadow, leaving individuals with enduring symptoms that debunk conventional CDC timelines, persisting for weeks, months, or even longer, despite what is deemed ‘appropriate’ treatment.

The CDC’s goes on to list disease agents or co-infections associated with chronic symptoms, including Borrelia burgdorferi, Campylobacter, Chikungunya virus, Coxiella burnetii, Dengue virus, Ebola virus, Epstein Barr virus, Enterovirus, Poliovirus, SARS-CoV-2 (COVID-19), and West Nile virus. What’s striking is the challenge faced by many: identifying the specific infection triggering these persistent symptoms. For some, the initial infection might have gone unnoticed, leading to a diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome.

This update holds broader significance. For years, the medical community, including the CDC, resisted acknowledging the chronic nature of Lyme disease. Even after distancing itself from the IDSA Lyme treatment guidelines, which denied the existence of chronic Lyme, the CDC remained cautious in recognizing persistent Lyme symptoms. However, the arrival of COVID-19 shifted the paradigm dramatically.

The pandemic brought forth a wave of ‘long COVID’ cases, characterized by symptoms like debilitating fatigue and cognitive fog—symptoms strikingly similar to those endured by individuals with persistent Lyme disease, ME/CFS, and other chronic conditions. A 2022 CDC survey revealed the staggering scale of long COVID’s impact: nearly 18 million Americans wrestled with it since the pandemic began, with almost 9 million still affected at the time of the survey.

Perhaps ‘long COVID’ forced the hand of the CDC to shift its language around Lyme disease.  Nevertheless, this is not an admission of chronic Lyme, but it is an acknowledgement of chronic illness and symptoms that interplay with a Lyme diagnosis. This update underscores progress, acknowledging the enduring impact of infections. Yet, it serves as a stark reminder of the long road ahead in the fight for recognition and understanding of chronic Lyme disease. While the CDC’s step towards recognizing persistent symptoms is notable, the battle for acknowledging and addressing chronic Lyme disease at the CDC is far from over.

To see the updated webpage on the CDC’s website, click here

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**Comment**

I do not share the same optimism as the authors of these articles, and I write about my reasons in the comment section of this article.

In short, the CDC is such an abject, conflict riddled organization that abandoned science so long ago, it should be completely disbanded.  Any statements it makes should not only be taken with a grain of salt – you should do the exact opposite.

If their brazen, continued illegal handling of COVID didn’t prove this, nothing will.

This institutionally biased agency has manipulated, ignored, and hidden data for its own purposes, insists upon using its own faulty tests, cherry picks and destroys inconvenient data, owns patents on virtually every aspect of disease, and actually purchased, monitored, and used your cell phone data.  Source

For some reason people still want to believe in this evil agency when it has done nothing to help patients.  And when I say nothing, I mean nothing. In fact, it has been the direct cause of patient suffering for over 40 years.  Did you know it began in 1798 as the Marine Hospital Service (MHS) which then morphed into the Public Health Service (PHS) in 1902 that sprayed for mosquitoes with DDT during WWII.  What started as 400 employees mushroomed to 15-16 thousand.  Did you know that it was behind the Tuskagee Experiment before changing its name to the Communicable Disease Center (CDC) which then became the Centers for Disease Control (CDC)?  The agency’s initial focus was on tropical and subtropical diseases.

Did you know it is not a true government agency due to vast amounts of private funding it funnels through the CDC Foundation?
No matter how many times this agency changes its name, it remains the same evil, corrupt agency.

I also question the entire premise of “Long-COVID.”  Until the “vaccinated” are separated from the unvaccinated – nobody will ever get a true picture of anything.  “Long-COVID” could very well be a bait and switch to distract from all the adverse reactions from the gene therapy injections that are riddled with so many problems it’s hard to keep up with them all.  ‘The powers that be’ definitely need a scape-goat and “Long-COVID” fits the bill perfectly.

I’m so done with the CDC and you should be too.  

Category:

Activism, Lyme, Viruses

CDC Now Lists Lyme As Infection That Can Cause Chronic Symptoms – Don’t Expect Much From This

https://www.lymedisease.org/cdc-chronic-lyme-iaccpac/

CDC now lists Lyme as infection that can cause chronic symptoms

A new page on the CDC website is headlined Chronic Symptoms Following Infections.

It goes on to say: “Infections can sometimes leave people with symptoms that last for weeks to months or longer, even after appropriate treatment.”

(I quibble with their use of “appropriate.” But I’ll leave that alone for now.)

Look what the CDC web page says next–and notice what’s at the top of the list:

Some disease agents that have been linked to chronic symptoms

Some people with chronic symptoms following infections may not know which infection triggered the symptoms, or even recognize that they had an infection before their chronic symptoms began. People with chronic symptoms and unknown preceding infection may be diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome.

Why is this significant?

For years, the CDC and others in the medical establishment have been loathe to acknowledge that Lyme disease can turn chronic.

For a long time, the agency openly endorsed the IDSA Lyme treatment guidelines, which flatly deny that chronic Lyme exists. Even when the CDC removed the link to the IDSA guidelines from their website and softened some language, there was little support for the concept of persistent symptoms of Lyme disease.

Then along came COVID…

COVID-19 changed all that. Soon after the beginning of the pandemic, so many people began experiencing long-term symptoms of the illness that the term “long COVID” entered the national lexicon. Among the most prominent symptoms of long COVID were debilitating fatigue and brain fog–two symptoms also common in people with persistent Lyme disease, ME/CFS, and a host of other chronic conditions.

According to a 2022 CDC survey, nearly 18 million Americans have suffered from long COVID at some point since the pandemic began, and almost 9 million did at the time of the survey.

Those numbers were too big to ignore–and it opened the door for looking at other chronic conditions that shared symptoms with long COVID.

In June 2023, the National Academy of Science, Engineering and Medicine (NASEM), brought together high-level health officials, academic researchers, and knowledgeable patient advocates to look at the question of “infection-associated chronic illnesss.”

And just this past week, patient advocates that have joined IACCPAC–the Infection-Associated Chronic Conditions Patient Advocacy Coalition–held an online webinar introducing the coalition and its goals.

These are the groups currently involved in IACCPAC:

LymeDisease.org’s Lorraine Johnson was among the panelists at the IACCPAC workshop. She emphasized that patients can’t wait for decades-long studies to determine which treatments are best. It’s essential to accelerate research now.

The various conditions listed above are different in many ways, but they share many unique challenges. By working together, we’ll be able to accomplish things that are much harder to do individually.

I believe things are starting to shift. Stay tuned.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, President of LymeDisease.org. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide, and of Finding Resilience: A Teen’s Journey Through Lyme Disease. Contact her at dleland@lymedisease.org.

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**Comment**

The only reason the CDC changes anything is if it benefits their bottom-line and their vested interests. Admitting diseases can be “chronic,” “persistent,” or “long haul” will assist their “vaccine” narrative – particularly using the mRNA platform.  Rather than finding safe, cheap, repurposed drugs to help patients, or accurate testing, it will all be used for lucrative “vaccine” research and development.

I don’t expect much to happen from this, other than many Lyme advocates will continue to support government agencies that have only gas-lit and ignored patient suffering.

If you click on the Lyme link, it leads you here with the infamously biased title Post-Treatment Lyme Disease Syndrome.  While it at least states that some experts believe it’s an auto-immune response while others hypothesize that PTLDS is from persistent but difficult to detect infection, while yet others believe it’s due to other causes unrelated to Borrelia burgdorferi infection, here’s the kicker: 

Studies funded by the National Institutes of Health (NIH) have found that long-term outcomes are no better for patients who received additional prolonged antibiotic treatment than for patients who received placebo. Long-term antibiotic treatment for Lyme disease has been associated with serious, sometimes deadly complications, as described in the links below.  Patients with PTLDS usually get better over time, but it can take many months to feel completely well.

This right here means nothing is going to change. While long-term antibiotics may not be the answer for every Lyme/MSIDS patient, they saved my life, my husband’s life, and the lives of countless others, but due to this unchanging threatening verbiage – no mainstream doctor will dare to prescribe the very thing that could save lives.

I’m not a negative person, but I am a realist.  A pig with lip-stick on is still a pig.

Don’t expect much from this other than gad-loads of money continuing to be spent on the wrong things – including “climate change.”

Just like Fauci told the government NOT to do autopsies on COVID deaths, and just like they made it illegal to analyze what was in the COVID injections, the very thing that could end the Lyme wars are chronic Lyme post-mortem studies, but mark my words: these will not be done.

Category:

Activism, Lyme

Podcast: When a Family Has Lyme

https://www.lymedisease.org/podcast-when-multiple-members-of-your-family-have-lyme-disease/

PODCAST: When multiple members of your family have Lyme disease

By Fred Diamond

10/16/23

It’s hard enough managing your own or just your child’s persistent Lyme symptoms, but what do you do when multiple people in your family have Lyme and other tick-borne illnesses? What kind of support do you need and where do you get it?

On this week’s Love, Hope, Lyme Podcast, I talk with Jessica Snajder, founder of Partner in Lyme, a non-profit that distributes funds to families in Connecticut for medical care. She discusses how her family coped when she was diagnosed with Lyme three years after they started caring for her teenage daughter.

“I founded Partner in Lyme based on the experience my oldest daughter had with her diagnosis, the complications of treating Lyme, and the financial aspects of treating Lyme and I felt that something good had to come out of our family’s experience,” she said. “I have also become a patient. I was diagnosed with Lyme and have been in treatment myself. It has evolved from my daughter’s care to a nonprofit and then to a family experience.”

“Partner in Lyme was really born out of that desire to make something good come out of a really bad situation. We give financial support to Lyme survivors in Connecticut to spend on anything that falls under the wellness umbrella that helps them heal in their body, spirit, and soul.”

I asked her if everyone in Connecticut understands the disease, since it was named for a city in the state.

She said that it is not the case.

“Residents of Connecticut still are operating under such misconceptions about what Lyme disease is and what it is not. Not enough doctors are screening proactively at yearly checkups. Pediatricians are not looking for signs. There’s a lot of missed opportunity to catch people early on in treatment and it’s very hard to find a doctor to work with and afford.”

What Do Those Who Love a Persistent Lyme Survivor Need to Know?

Jessica said Lyme survivors might need emotional, physical, and financial support.

“No matter who that person is, they need emotional support. Chronic Lyme is isolating, it’s physically debilitating, and it impacts who you are. There’s a grief process that the person with Lyme goes through.  You’re going to mourn the things that you can no longer participate in, and how your life has changed through no desire of your own.”

She also said that sometimes physical support takes precedence and can be different from person to person.

“Everyone in my family has had different physical issues. One of us has had more neurological issues, which has resulted in them not being able to drive. Someone else has mobility issues and that has led at times to wheelchair use or spending days on the couch until a flare passes,” she said.

“For myself, it was a little bit of both plus memory issues. My family thought I was multitasking or maybe on my phone when they were speaking to me. They would get frustrated with me when I wouldn’t respond, but once they realized that this wasn’t me not paying attention, this is my mind being affected by a bacteria, then it was easier to say, ‘all right, I’ll repeat that for you,’ or, ‘I won’t get aggravated if I think that you’re just not listening to me.’

Not surprisingly, financial support is often needed.

“Unless you are a wealthy individual, it’s almost impossible to do all the things that you would like to do and that your doctor may advise you to do,” she suggested.

She said that people don’t understand you just cannot go to your primary care physician for chronic Lyme. She estimated that the average patient spends about $50,000 out of pocket a year, if they can. Since most people cannot afford that, they’re not getting the treatment that they need, which means they need even more emotional support and even more physical support, because their bodies are not getting what they need to heal.

Complications When She Got Lyme Disease

Jessica said she was diagnosed with Lyme three years after her daughter was diagnosed.

“My oldest daughter was diagnosed in 2018, after seeing 10 doctors and struggling for about a year and a half to figure out what was wrong with her. That affected her senior year of high school into college. There was a lot of support that had to be given just to get her to finish school. I was driving her to college, waiting for her to finish her classes, and then driving her home.”

Jessica said being a caregiver was deeply entrenched in her day-to-day life and helped her process her own diagnosis. “I had the benefit of understanding this disease deeply. I was one of those classic long COVID cases but because I knew enough about Lyme, I knew it was not normal that my joints were hurting too.”

“My biggest takeaway was just the heartbreak for wanting things to go back the way they were and knowing that they can’t easily, and they may never go back. It’s reframing your life. As a 50-year-old woman, it’s easier for me to do that than as a 20-year-old young person,” she observed. “My heart just broke a bit more for her when I realized how significantly this takes a toll on your mental health. Looking for joy, trying to experience joy in a different way.”

Her Suggestion for Caregivers

When I asked her for advice for people who want to support Lyme survivors, Jessica said to avoid generalizing.

“When you share that you have Lyme, inevitably someone will say to you, “Oh, so-and-so had Lyme and they did X, Y and Z and they’re better. It’s no big deal. Well, yes, it’s a big deal. There are lot of misconceptions about how to treat Lyme and how not to treat Lyme. When you share these anecdotal stories of someone’s friend of a friend of a friend, it’s not received well.”

She advised not to minimize it and to try to think of it as if this person in your life was diagnosed with cancer. “Just cut off cancer and put in Lyme because the similarities between those two diseases are very strong and the quality of life for someone with Lyme consistently rates lower than someone who has been diagnosed with cancer.”

The biggest thing is to empathize with them. To not take anything that happens personally.

“If you are willing to set yourself aside and be selfless in your expression of how you love that person, whether you’re loving them as a friend or as a spouse, it’s humbling to set yourself aside and give that person what they need. It is a lesson in what love really is. Being compassionate, being kind, being selfless, seeking someone else’s well-being above your own.”

Learn more about Partner in Lyme here.

Click here to listen to all episodes of the Love, Hope, Lyme Podcast or on YouTube.

Fred Diamond is based in Fairfax, VA and can be contacted via Facebook. His popular book, “Love, Hope, Lyme: What Family Members, Partners, and Friends Who Love a Chronic Lyme Survivor Need to Know” is available on Amazon. The e-version of the book is always free to Lyme survivors. Send Fred a private message on Facebook for your copy.

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**Comment**

We spent about 15K per person about 10 years ago; however, our LLMD doesn’t test much as he just doesn’t feel they are accurate – plus they cost a lot of money. We stuck primarily with low cost antibiotics and when they were expensive we ordered from a Canadian pharmacy which gets most of these drugs from India making them much cheaper.  You have to plan a month in advance to do this successfully.  That said, we had to supplement with many things and supplements are rarely cheap.

The last I checked, an herbal treatment program runs about $300 a month per person unless you get the ground herb in bulk and make your own.

For more:

Category:

Lyme, Treatment

Finding Happiness Even When You’re Chronically Ill

https://www.lymedisease.org/happiness-when-chronically-ill/

Finding happiness even when you’re chronically ill

By Mark Rego, MD

10/10/23

In my years of psychiatric practice and my following years of illness, one problem has appeared unsolvable. How does someone who is chronically ill (me included) build a happy life?

The usual recipes for happiness simply do not work if your life is marked by continuous illness. The obstacles of disease will sabotage plans taken from normal life.

So, how do you advise someone whose life has been brought to a halt by illness on how to build a new, contented existence? Is there a different recipe for the chronically ill?

Chronic illness: physical and mental dimensions

So, what and who do I mean by chronically ill? What are the limitations of being ill, and how do they thwart the usual formulas for happiness? And, finally, is there a way around these barriers?

The diseases I have in mind are things like rheumatologic disorders (severe arthritis, such as rheumatoid arthritis and Lupus), neurologic disorders (multiple sclerosis, degenerative diseases), severe mental illness (when severe, almost any mental disorder fits here), injuries that leave you impaired and in pain, cancer, and other severe medical conditions, such as organ failure (congestive heart failure, kidney failure, liver insufficiency, significant breathing impairment, etc.). [Editor’s note: and persistent Lyme disease!]

When serious enough, these illnesses have something in common. They leave you greatly diminished. This can be forever or for long stretches that will undo much of your life.

There is less of all of you, not just a bad bone, back, or blood test. You can no longer get up in the morning and go out to live your plans. Work, taking care of yourself, having regular personal interactions, and, lastly, some frequent enjoyment become parts of your past.

Your shrinking world

This is not normal aging or the physical limitations that many people face. It is a fundamental change in all of your life. A change that shrinks your world to a lesser version of everything you knew.

People will compliment your fighting spirit. You are brave and heroic and have amazing coping skills. But it rings hollow. In reality, you tread water very well. Or, perhaps, you are told it’s the journey, not the destination. But the sick already have a journey; what they want is a life.

You work hard to get better, go to doctors, take medicines, and do rehabilitation and psychotherapy. If you’re in this group, you know that this work is never done.

What troubles me most about these situations is wherever I look for advice on building a happy life, these unlucky souls are not included.

Finding happiness in sickness and in health

Such advice is generally based on either finding meaningful activity or having strong connections to others. How does one do these things when isolated and disabled from chronic illness? Trouble walking, shortness of breath, persistent pain, problems with mood and thoughts, or the low energy that is almost universal in this group make even brief tasks quite difficult.

For meaningful activity or connecting to others, you need to be places on certain days, at certain times, and for a certain number of hours. Sickness knows no such schedules. Bad days appear when they will.

If lucky, you have folks who will visit. But these are visits to your life; they are not in your life the way immediate family members, coworkers, and others you may see and talk to regularly are. While such visits are greatly appreciated and enjoyed, they do not constitute the full dimensions of a social life. Being in someone’s life means knowing the ins and outs of their days. The catch-ups that occupy many visits are not needed in these connections.

Another common obstacle to happiness is depression itself. This is very often a part of the sickness process. But if we look at research about impediments to recovery from depression, we find that people who are in pain, chronically ill, disabled, or isolated all have difficulty recovering. The sick are often all of these.

Of course, sometimes things come together, and a different version of life takes shape. People find a place for themselves, maybe some work that is doable and meaningful. I am not sure how often this happens, but such experiences are not the rule.

Step 1: Build back a version of what you had

So, what are some guidelines for happiness for the sick? The first step is to build back a version of what was lost. This entails calls and emails to invite friends for a visit. As stated above, this will not be a full replacement for a social life, but without connections, people wither and become depressed. In addition, activities to pass your time with a modicum of interest or enjoyment must be found. Time passes very slowly without things to do.

The burden of rebuilding falls squarely upon the chronically ill. A life must be built brick by brick. But as discussed above, this is not enough. There is more work to be done.

Step 2: Acceptance as a necessary bridge

The next step is the work of acceptance. It is hard to underestimate how deeply we can reject the reality of our lives. Emotional acceptance of circumstances is not assured by the passage of time. There are, of course, many ways to walk this leg of the journey. Religions have ways to approach this, but many people find their own paths. This work is an ongoing process. Grieving losses such as your own health, work, and social life can be a lifelong process.

Acceptance is a bridge to the next step. This is because the flip side of acceptance is letting go of the burdens of normal life. By accepting your plight, you also allow yourself to participate less in worldly goings on. This frees you to spend time as you like.

Step 3: Building a bigger internal world

This brings us to the final and most important step: building an internal life. Normal life is lived in the world. It gets bigger as we do more, grow our skills and relationships, and expand our horizons. Chronic illness ends this.

As your external life grows smaller, your internal life must now expand. The path is lit by wonder, amazement, curiosity, and interest. Find what amazes you and begin there. This might be revisiting things that were fascinating in school but you could not do more of. Or perhaps you are learning something you have always wondered about. An art, craft, skill, a secret story to follow, or a new one to tell.

In my case, I took up portrait painting (something I never would have imagined) and studied areas of science that I loved in school but did not have any role in my job as a psychiatrist. Each time I begin one of these, I am excited about what I will discover. They are new worlds for me.

Find what amazes you and begin there

How does a chronically ill person find this? The way is to ask what amazes you. What makes a small smile appear on your lips, not because it is funny but because it is beautiful and amazing, incredibly interesting, beyond understanding? Then open a book, a web page, or whatever tools you need. A daily meal of what expands the horizons within your mind becomes the guiding path of your new life. The more something astonishes you, the more space it will open within you.

There is no one you must help here, nothing to build or express. No homework. No reports. No schedule or tasks to do. You do it just because it amazes, excites, piques your curiosity. This is enough and has been the driving energy behind the most incredible lives. This is when you exercise the flip side of acceptance and excuse yourself from needing to achieve something other than to be very interested.

Will this lead to other things? Maybe. But the point is, it does not need to. It will be just you and a happier you with a spacious inner world to explore.

The chronically ill build a happy life by constructing a version of normal life, finding acceptance for a new self, and, most importantly, expanding their inner life. You can reside in a small part of the external world but have endless room to roam in what delights and astounds you.

Mark Rego, MD, is a psychiatrist and a clinical assistant professor at the Yale School of Medicine. He is the author of Frontal Fatigue: The Impact of Modern Life and Technology on Mental Illness. You can learn more about his work at his website.

For more:

Category:

Activism, Lyme, Psychological Aspects

Oct. 31 Webinar: A Rash of Tickborne Illnesses: Current Challenges With Diagnostic Testing

Upcoming Webinar: A Rash of Tickborne Illnesses: Current Challenges With Diagnostic Testing

Date: Oct 31, 2023 9 a.m. PDT/12 p.m. EST

Please join us for an upcoming webinar, “A Rash of Tickborne Illnesses: Current Challenges with Diagnostic Testing,” an hour-long webinar featuring Elitza S. Theel, Ph.D., D(ABMM) and Elizabeth Lee-Lewandrowski, Ph.D.

  • Understand the incidence and prevalence of tickborne illness
  • Review the current testing methodologies available for Lyme disease
  • Explore current diagnosis guidelines for Lyme disease
  • Discuss the advantages of Point-of-Care diagnostics for Lyme disease

Go here to register:  https://gateway.on24.com/wcc/eh/3300431/lp/4379756/a-rash-of-tickborne-illnesses-current-challenges-with-diagnostic-testing

Category:

Lyme, Testing