Suicide Prevention in POTS
The potential for suicide is there for adolescents and adults who suffer from POTS. While those with POTS don’t have higher proportions of mental health issues than the general population, the suffering that is a part of moderate to severe POTS can lead to thoughts about ending their suffering. In the general population, suicide is the second leading cause of death for people ages 15-24. If you or anyone you know is having suicidal thoughts, please seek immediate professional help, call the Suicide Prevention Lifeline at 1-800-273-TALK, or text HOPELINE at 741741 with the word "start" to get the assistance that you need.
Risk factors for suicide
- Major physical illness
- Sense of isolation
- Job or financial loss
- Loss of relationship
- Stigma associated with asking for help
- Easy access to lethal means
- Lack of health care
- History of trauma or abuse
- Previous suicide attempt
- Family history of suicide or exposure to others who have died by suicide
Tips for family and friends
Believe them. The BEST thing you can do for a person with POTS is BELIEVE THEM when they talk about their symptoms or the way they are feeling. POTS is an invisible illness – that means that you can’t look and see their level of suffering. When most people get sick, they have a fever, swollen glands, or runny nose that allows others to see that they are not feeling well. That is not the case for people living with invisible illnesses like POTS. What does it look like if a person is dizzy? Can you assess their level of fatigue without feeling it yourself? What does neuropathic pain look like to the outside observer? You can examine their legs, but there is no cut, no swelling or warm sensation, but the pain is real and can be severe. Believe them!
Stay in contact. Some people with POTS are housebound and isolated. This includes many adolescents with POTS who resort to homeschooling, partial days at school, and withdrawal from many activities due to their symptoms. This is not their choice. Sending the occasional text message or email can do wonders. Pick up the phone once in a while to let them know you still care. Human contact is important for everyone, but particularly for the chronically ill.
Be understanding. Don’t make the person with chronic illness feel guilty about canceling plans at the last minute because they don’t feel well enough to participate. Offer to come to their house to watch a movie instead of going out. Human contact is wonderful, but can be fatiguing. If you add the energy spent to get ready, ride in the car, and walk to the destination, the likelihood of a cancellation increases.
Don’t try to fix their POTS. There is no easy fix. Listen to your friend or family member without judgment and without the need to offer insights into a new medication or vitamin supplement that worked for Aunt Betty’s occasional energy problems. Your compassion and understanding is all that is necessary.
Take talk of suicide seriously. Thirty percent of adolescents talk about suicide before they make an attempt and eighty percent show some warning signs. Stay with the person and call for help. While you can be a good friend and listener, they need to speak with a professional who can help them think about their depression, anxiety or other underlying problems. Get them into counseling ASAP.
If you know someone that is contemplating suicide, it is imperative that you act NOW! Hoping that they will outgrow their thoughts, or hoping that they will pass with time is risky. It is important to get your loved one into a good counselor immediately. For more information, check out our counselling page.
Warning signs for suicide
- Talking about
- wanting to die
- feelings of hopelessness
- feeling trapped
- unbearable pain
- being a burden to others – “Nobody will miss me” or “You’ll be better off”
- Visiting or calling people to say goodbye
- Giving away prized possessions
- Feeling ashamed, humiliated, or desperate
- Acting anxious or agitated
- Changes in sleeping patterns – too much or too little
- Changes in appetite
- Drop in grades at school
- Self imposed isolation
- Extreme mood swings
- Increased drug or alcohol use
- Actively developing a plan – gathering pills or gaining access to a gun
If you see any of these warning signs being displayed on Facebook, report it immediately here. https://www.facebook.com/help/contact/?id=305410456169423 Facebook will send the user an email with the Suicide Prevention Lifeline number and a link to speak with a counselor.
To parents who are concerned about their child
Wondering if your child is suicidal is scary. Your child needs you. Hoping that he or she will outgrow suicidal thoughts is risky. Here are some links that might help you think about what to say when you talk to your child.
To the person with POTS
“I can't strongly enough encourage anyone who feels that there is no hope for anything better in their future to HANG IN THERE and SEEK PROFESSIONAL HELP and REACH OUT to others and tell them how you're feeling!!! I believed that there was no hope to get better. But if you'd told me things would be as good as they are today, 5 or 10 yrs ago, I wouldn't have believed you. I take medications to help me with anxiety and depression issues, and I wish more people knew there is no more shame in taking those than there is in taking chemotherapy or heart medication. It's not for everyone, but medications can be a very useful and sometimes lifesaving adjunct to talk therapy. I'm so happy, even though things have gotten worse medically. I've learned a lot of great coping skills, and I know now I can go on and trust that even the bad times will eventually pass. Please...if you're feeling like you can't go on...call for HELP immediately. You are loved, you are unique, you are a precious wonder...and even though you're hurting, you are still priceless beyond compare. Let someone help you.” S.G.
Are you getting the best medical care? If you don’t feel like your doctor understands your illness or is actively trying to help you, change doctors! Finding the right doctor for you can mean the difference between being homebound and resuming some semblance of your normal life.
Try to maintain hope! Please remember that research is currently ongoing for the diagnosis, treatment, and cure for POTS. Hold onto the hope that a new treatment will be found that helps you to gain significant control of your symptoms.
Reach out to a trusted family member or friend. Trust them and share what you are feeling. Let them help you.
Do you really want to die? Many who consider suicide don’t really want to die, but can’t fathom how to continue living. Please find someone to help you figure out how to live with POTS. There are support communities out there for those with POTS that can help you gain perspective.
Call the National Suicide Prevention Lifeline at 1-800-273–TALK (8255) to speak with a counselor. They are available 24 hours a day, 7 days a week and are professionally trained to listen and get you the appropriate help. Please call if you are having suicidal thoughts. Your life matters!
Text HOPELINE at 741741 with the word "start" to text with a live, trained specialist. HOPELINE Text Line serves anyone in any type of situation, providing them access to free, 24/7 emotional support and information they need via the medium they already use and trust: text. For more information, visit Crisis Text Line.
Online POTS communities that you can join to interact with others who understand
Standing Up to POTS on Facebook
The Dysautonomia Support Group on Facebook
Standing Up to POTS: Teen Support on Facebook is ONLY for teens and college students with POTS
POTSibilities Parents on Facebook is ONLY for parents of children with POTS
Inspirational Articles with Reasons to Live
Standing Up to POTS Suicide Prevention Board
At Standing Up to POTS, we recognize the burdens that come with chronic illness and seek to address those concerns in order to improve quality of life. Several people within the POTS community have died by suicide, and others have made attempts at death by suicide. Every life matters! We feel that the key to suicide prevention lies in addressing the underlying issues:
- Lack of quality medical care to treat complex, chronic medical illnesses like POTS, myalgic encephalomyletis/chronic fatigue syndrome, fibromyalgia, Ehlers Danlos Syndrome, gastroparesis and mast cell activation disorder
- Physical issues that lead to decreased mobility, poor memory, confusion and overall poor quality of life
- Many people, including physicians, blaming the chronic illness on psychological conditions
- Judgmental and emotionally abusive family and friends
- Withdrawal of love and/or support due to lack of understanding of the true impact of chronic illness on the ability to participate in life
- Feelings of isolation and loneliness
- Patients' perception that they are a burden to family and friends
- Loss of hope for recovery or improvement in quality of life
- Financial pressures from medical bills, medication, and the inability to work
This Board is committed to working toward improving the quality of medical care and quality of life for those with chronic illnesses. The Suicide Prevention Board Members are:
- Jill Brook, M.A. in Health Psychology, PatientCounts.org
- Laurie LeLacheur, The Face of Dysautonomia
- Greta Hochstetler Mayer holds an Ed. D. in Counselor Education and is a licensed professional counselor. She is Director of Prevention and Community Engagement for the Suicide Prevention Coalition
- Cathy Pederson, Ph.D. in Physiology and Neurobiology, Standing Up to POTS