Lyme Disease is Causing a Mental Health Crisis: Here's What To Do

This article was first published on the Global Lyme Alliance blog on May 10th, 2019. Most of the links on this post are informational, but a few are affiliate links to help maintain this website.

Note: This post discusses self-harm and suicide. If you feel suicidal or a danger to yourself or others, PLEASE call 988 Suicide & Crisis Lifeline 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." 

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 gets better. 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 sure your 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 meds, 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.
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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 988 Suicide & Crisis 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. 

988 Suicide & Crisis Lifeline: 988
Crisis Text Line: Text “HOME” to 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.

"Here are the two best prayers I know: 'Help me, help me, help me' and 'Thank you, thank you, thank you.'" - Anne Lamott