Tag Archives: Lyme depression

Lyme Disease is Causing a Mental Health Crisis: Here’s What to Do

By Kerry Heckman

Note: This post discusses self-harm and suicide. If you feel suicidal or a danger to yourself or others, PLEASE call the National Suicide Prevention Lifeline: 1-800-273 TALK (8255),or text “HOME” to 741741 to reach the Crisis Text Line. You can also call 911, or go to your nearest hospital emergency room. YOU ARE NOT IN THIS FIGHT ALONE.

May is Lyme Disease Awareness Month and Mental Health Awareness month. These matters are inextricably linked because there is now a mental health crisis among those with tick-borne diseases. As Dr. Robert C. Bransfield writes, “Lyme and other tick-borne diseases contributes to causing a significant number of previously unexplained suicides and is associated with immune-mediated and metabolic changes resulting in psychiatric and other symptoms.”[i]

If you’ve been in this circle for even a short while, you most likely have heard about a fellow Lyme warrior who died by suicide. You may have even known the person or have once called them your friend. Sadly, it happens far too often.

Statistically, those with any chronic illness are more likely to die by their own hand than those the general population, but for those with Lyme and other tick-borne diseases the risk is even greater. The reason for this is complex, but here are three  important factors to consider:

1. Living with Lyme disease is hard.

The fatigue, the aching joints and muscles, the headaches, the brain fog and other symptoms of Lyme disease are constant and debilitating. Moreover, most Lyme patients have insomnia and rarely get a break from the barrage of symptoms. This means the patient also has to cope with a great deal of uncertainty (anxiety) over his or her health— a very heavy burden.

2. Lyme disease treatment is notoriously challenging for a variety of reasons, all of which it helps the Lyme patient to be aware of.

First, because Lyme and other tick-borne diseases are not accepted by the mainstream medical community, the psychiatric ramifications of such illnesses generally go unconsidered by most doctors. Second, because treatment is often long term, painful, and the patient may get worse before he or she getsbetter. Third, Lyme disease treatment is expensive and rarely covered by health insurance, even though patients are often unable to work while undergoing the process.

3. Lyme disease bacteria can infect the brain.

Neurological Lyme disease affects thinking and behavior. Thoughts can become distorted and hopeless and often rise to traumatic levels. It’s said that “depression lies,” because people’s nervous systems send them messages that they are worthless or a burden to others in their life. Lyme disease lies, too, since it fosters depression and its woes.

What’s important to remember is that you are not alone in this fight. There are millions of people living with Lyme and also people in remission who stay connected to the Lyme community in the hope of helping others.

Naturally, as a therapist, I encourage everyone with Lyme disease to consider therapy. Ideally, you should make sureyour therapist understands chronic illnesses and medical trauma. However, simply having an empathetic ear to listen to your story can be  transformative. Often our friends and family don’t understand how difficult it is to live with this disease, so a therapist can be a necessary support in this fight.

But what if regular therapy isn’t enough. What if you are in crisis right now and need help? 

How To Tell if You Are in a Mental Health Crisis:

1. Self-harming behaviors.

Self-harming behaviors have many manifestations. They may look like self-injury, such as cutting or burning or they may manifest as the patient purposely not taking important medis, or taking too much of something that can be harmful.

2. Suicidal thoughts.

Thoughts about suicide are a sign of something very serious taking place and require immediate attention. Take note if your thoughts are increasing in frequency and intensity—If the trend is on the rise this can determine the level of intervention you  need. Feelings of suicide should never be ignored.

3. Suicidal plans or behaviors.

Having a plan to complete suicide or engaging in behaviors, such as saying goodbye to loved ones or giving away possessions is a medical EMERGENCY. Call 911 or go straight to your nearest emergency room and tell them what is happening.

4. Your intuition.

Do you feel like you need immediate mental health care? Therapists, outpatient, and inpatient programs are all more accessible than ever before. With tele-health becoming more popular, you may even be able to see a psychiatrist or therapist through a secure video chat platform.

What To Do in a Mental Health Crisis?

1. Call 911 or go directly to the nearest emergency room.

People who survived suicide attempts report that the time between considering suicide and making an attempt is only about an hour. That’s a very small window. Seek help at once.

Many of us who have Lyme also have negative perceptions of emergency rooms, but during a mental health crisis the focus is not on treating the Lyme disease. Doctors need to observe you and assess your suicidality. Most importantly is that you are in safe and contained place where you can get help.

2. Call or text a suicide hotline.

Suicide hotlines, such as the National Suicide Prevention Lifeline are free, anonymous, and available 24/7. These hotlines can also help you find information about local suicide crisis resources, such as voluntary inpatient and outpatient programs.

National Suicide Prevention Lifeline: 1-800-273-TALK(8255)

Crisis Text Line: Text HOMEto 741741

3. Reach out to a trusted loved one.

Opening up about mental health can make one feel ill at ease and vulnerable, but talking to such a loved one can help you immediately. Ask this this person to help you get the care you need.

How To  Prepare Yourself for a Mental Health Emergency

1. Remove firearms from your home and lock up lethal medications

2. Make a contact list of crisis phone numbers, local resources, and trusted friends or family members. It’s a good idea to let these people know in advance that they are on this list, so they can be prepared to rise to the occasion if necessary.

3. Print this article out, fold it up and keep it with you always. You never know when you may need to consult it.

Always keep in mind, you don’t have to go through Lyme disease all alone. If no one sympathetic is near, search the internet in your area for Lyme or chronic illness support groups. If you can’t find such a community where you live, please dig deeper. There are thousands of people creating safe spaces and raising Lyme-suicide awareness online.

You deserve to heal. You deserve a life free of Lyme and its many debilitating symptoms. You deserve to be seen and heard. You deserve to be treated with dignity and respect in your illness. The world needs you and you need the world.

 


[i]Bransfield RC. Suicide and Lyme and associated diseases.Neuropsychiatric Disease and Treatment,2017; 13:1575-1587.


kerry heckmanOpinions expressed by contributors are their own.

Kerry J. Heckman is a licensed therapist and author of the healing and wellness blog Words Heal. She was diagnosed with chronic Lyme disease in 2016.

lyme warrior_lyme Q&A

Dear Lyme Warrior…Help!

By Jennifer Crystal

Every few months, Jennifer Crystal devotes a column to answering your questions. Below are her responses to a few recently received questions. Do you have a question for Jennifer? If so, email her at [email protected].

When a patient has a Herxheimer reaction, does she experience whatever symptoms are specific to her case, but enhanced? I have heart palpitations and headaches.

This is great question, coming on the heels of my recent column, What Does it Mean to Herx? As I explained, a Herxheimer reaction is when antibiotics kill off more Lyme bacteria faster than the body can eliminate, so there is a lag. This makes the patient feel worse before she feels better. For me, this resulted in increased sweating and elimination, as my body sought to detox itself. It also meant an increase of symptoms I had otherwise experienced at a lesser degree. I was extremely fatigued, had severe migraines, and my joints ached.

I never had a specific symptom like heart palpitations during a Herxheimer reaction. But, yes, on the whole it would seem that herxes bring out exacerbated versions of each of our own symptoms, since every Lyme patient experiences the disease differently. Some have heart issues, some have gastrointestinal issues, some neurological impairment while others have impairments which are strictly physical. Because spirochetes like to squirrel themselves away from antibiotics, getting deeper into joints and tissues and sometimes crossing the blood-brain barrier, it’s possible that new symptoms can crop up.

In my experience, this is not the result of a Herxheimer reaction, but rather a result of spirochetes growing and spreading. A Herxheimer is a reaction to dead bacteria in the body. Entirely new symptoms are more likely to be signs of live bacteria. If you’re suddenly experiencing new symptoms that do not seem to be part of a typical Herxheimer reaction, it’s important to check with your Lyme-Literate Medical Doctor (LLMD) to see if you might need different or additional treatment.

Have you dealt with Lyme depression? How did you motivate yourself when you had to go through a bout of this?

Yes. For many years I fought against the fact that Lyme made me depressed. But because so many people—including some doctors— told me that I wasn’t sickand that my symptoms were all in my head, I thought that if I showed any signs of depression, I’d simply prove those people right.

What I ultimately came to realize is that my depression was an effect of my tick-borne illnesses, not the cause. I was depressed because I was physically sick. I wasn’t physically sick because I was depressed. That’s an important distinction, and once you recognize it, dealing with your depression becomes easier to accept as part of a physical and neurological illness that affects you emotionally and mentally. It’s completely natural for someone who is physically sick to feel mentally depressed. When I grew sick, I quit my teaching job in Colorado and left the the skiing life I loved, I moved back with my family in Connecticut. Who wouldn’t be sad about that? Who wouldn’t get downhearted, anxious, and fearful about being bedridden?

Spirochetes running rampant in your brain, and even the side-effects of certain medications, can induce symptoms of depression. Your depression could be both situational and chemical.  It’s important to talk to your LLMD about your symptoms. It may even make sense for you to see a psychiatrist or a talk therapist, or both; there’s absolutely no shame in that. It’s all part of healing your whole self from tick-borne illness. I needed anti-depressant medication for a time and talk therapy as part of my overall medical plan. They wouldn’t have worked alone, since I was fighting a physical disease that needed its own treatment, but they were an important adjunct therapy.

In addition to seeking medical support, there are a few things that helped motivate me during a bout of Lyme-related depression. The first was to recognize that this, too, shall pass—even when I was feeling this way for weeks or months, even when it seemed like there wasno foreseeable end in sight to my illness. I promise you it does get better. In the  “Writing to Heal”classI teach, I draw a spiral on the board to remind students that grief—like recovery—is a spiraling process. It’s not linear. You go through some good periods, then spiral downward a bit, then buoy back to the surface again then repeat the spiral. It’s a tedious process, granted,  but as a whole, the spiral is always upward and forward away from illness and toward health. When you go through a bout of Lyme depression, you are not back to square one. You are somewhere further along that arc towards health, just currently at one of its low points. You have already come this far and you have to remain confident and keep moving forward, knowing that you will slowly get better.

To help motivate yourself, I recommend talking to supportive friends, getting lots of hugs from them, and have them tell you some funny stories. In other words, don’t lose  your sense of humor; (laughter can be the best medicine!). Moreover, journaling not just about how you feel but about what you hope your future will look like; doing simple arts and crafts like coloring or scrapbooking; listening to classical music; and treating yourself to something to like a bubble bath or a pedicure. Be gentle with yourself!


jennifer crystal

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir about her journey with chronic tick borne illness, for which she is seeking representation. Contact her at: 

[email protected]