by Dr. Gary McClain, PhD

Published: Lifelines for Health Spring 2018

Living with a chronic condition like a bleeding disorder sure packs an emotional wallop. Not one but repeated emotional wallops. Over time, those wallops can wear you down, and impact your wellness – physical, emotional, spiritual.

One potential outcome is Post Traumatic Stress Disorder, known as PTSD. I know that’s a scary term. And believe me, my intent is not to scare you but to alert you of a potential condition and, more important, inform you about what you can do if you are concerned that you or a family member might be experiencing it.

Research has shown that individuals living with chronic conditions can and do experience PTSD. So, two important points to know: PTSD is treatable! And you are not alone!

What Is PTSD?

We generally think of PTSD in regard to men and women serving our country in the military. There’s a good reason for that. PTSD is an ongoing issue for those who have been in war zones.

So, I am going to give you first the traditional definition of PTSD, followed by what PTSD means when it is caused by the experience of living with a chronic condition.

Basically, PTSD is caused by exposure to a traumatic event. After this event, individuals with PTSD continue to be stressed or frightened even when they are not in real danger. The classic example of PTSD is someone who hears a noise and has an extreme reaction, as if exposed to danger when, in reality, they are not.

Symptoms of PTSD can result soon after the original traumatic event, or they may develop years later. For a diagnosis of PTSD, the symptoms must last more than one month. And they must be severe enough to interfere with daily functioning, like going to work and basic self-care, and relationships.

What Are the Symptoms of PTSD?

PTSD is a serious diagnosis and it is not made haphazardly. Mental health professionals have a very specific set of symptoms they assess before they determine that an individual is suffering from

PTSD. Here are examples of symptoms that are associated with PTSD:

• Unwanted memories

• Loss of pleasure

• Extreme reactions to reminders of events experienced as traumatic

• Irritability

• Changes in thinking or in mood after an event experienced as traumatic

• Self-blame

• Anxiety that occurs in anticipation of an event

• Sleep difficulty

• Anxiety about doing the right thing

• Isolating oneself from other people

Keep in mind that these can be symptoms of stress, or anxiety, or of other mental health conditions. Again, only a mental health professional who has been specifically trained to diagnose and treat PTSD can make this diagnosis. And again, the diagnosis is made based on the presence of multiple symptoms in a specific combination. All the more reason not to attempt to self-diagnose.

The Cause of PTSD Can Be Cumulative

This is a really important thing to keep in mind for individuals living with a chronic condition like a bleeding disorder.

Receiving a diagnosis can in itself be experienced as a traumatic event. In that case, the cause and effect are clear.

But notice that I use the term “experienced as a traumatic event.” That’s important to keep in mind
if you or a loved one has a chronic condition. The stress of events that at face value are relatively minor can build up over time. At some point, one relatively simple event can be what my mom used to call,
“the straw that broke the camel’s back.” In other words, if you are constantly in situations that result in stress, you may find yourself less and less able to cope. You may just be worn down emotionally over time. Consequently, at some point, you may begin to experience these events as traumatic.

Here are some examples of events that can, over time, lead to a trauma reaction:

• Running out of critical medical supplies, like factor

• Problems with insurance coverage

• A sudden onset of a bleed

• A canceled doctor’s appointment

• A major life change, like difficulty in performing basic tasks

• Uncertainty, like financial concerns

• An unhelpful medical professional

• Multiple failures infusing factor

I suspect you have experienced one or more of these events. And you probably have your own coping skills to help you get through them. But over time, experiencing one after the other, if not at the same time, you may find yourself less able to cope.

Here’s what I think of as the PTSD mindset: Your chronic condition may feel over time like a lurking enemy, and you may perceive yourself as being under siege, an ambush right around the corner. You may find yourself being what therapists call hypervigilant, constantly watching out for signs of attack. On the other hand, denial of emotions, feelings that are pushed down and not acknowledged, but tearing you apart inside, can also contribute to PTSD.

Why Would I Experience PTSD?

In other words, why me and not you? Or, why you and not me? There isn’t any one answer to that question. Susceptibility to a diagnosis of PTSD is based on a range of factors.

These factors include:

• Your basic personality make-up

• The number of events

• The frequency of events

• Your overall coping skills. Some of us are more resilient than others

• Your relationship with the healthcare professionals you are working with

What I want to emphasize is that PTSD is a mental illness. And like a physical illness, it is not something you choose. It does not occur because you are weak. And most important, it is treatable.

Another Caution: Caregivers Can Also Experience PTSD

In my own clinical experience, I am often as concerned about the mental health of caregivers, if not at times more concerned, as am I about the person living with the condition. So, if you are a caregiver, monitor yourself for signs that your ability to cope day-to-day is at risk.

What Can I Do? First, Reach Out to a Mental Health Professional

When I write mental health articles, I usually provide guidelines regarding what you can do to help yourself if you are experiencing whatever issue I am discussing. But I am reversing that order for PTSD. As I described, PTSD can have a major impact on your day-to-day functioning. It can not only interfere with your quality of life, it can affect your functioning to the point where it is difficult to effectively cope with the demands of everyday life.

If you suspect you are experiencing PTSD, it’s really important to reach out to a mental health professional – counselor, social worker, psychologist, psychiatrist. A trained clinician would have a talk with and evaluate your symptoms, discuss with you what’s going on, how you are feeling. After talking with you, a clinician will make a diagnosis. And them work with you on a treatment plan for the road ahead.

Again, your first step is reaching out to a professional.

Building Your Foundation for Healthy Coping

Living with a chronic condition like a bleeding disorder can turn your life into what feels like an endless roller coaster, and not the fun kind. You know more about this than I do. These ups and downs can be emotionally exhausting. But you can be in the best position to cope emotionally if you have a strong foundation in place.

The following are some ideas for better coping. Please understand that the ideas that follow are
not intended to be quick bandages or “cures” for PTSD, only a mental health professional can provide adequate assistance to someone with PTSD. However, having a foundation for healthy coping can help you get through those rough spots that, over time, can contribute to developing PTSD.

Cope Better with Stressful Situations

Step back. Ask yourself: Is this a catastrophe or am I magnifying a small inconvenience or annoyance and giving it the power to wreck my peace of mind? Keep in mind that PTSD can cause your thoughts to go quickly to a dark place.

Be aware of your symptoms and do something about them. Each of us has our own unique
way of reacting to a stressful situation. Bursts of anger. Hands balling up into fists. Sweating. Hyperventilating. Stomach clutching. Where do you feel your stress? Be conscious of how your body is reacting. Take calming breaths. Relax those tightening muscles.

Give yourself a talking to. Ask yourself a series
of questions: How am I feeling? What triggered all these feelings? What are these emotions making me want to do? And if I took that action, what would the consequences be? What you are doing here is engaging your rational mind to help you handle your feelings before they handle you. Watch how this process helps bring you back to yourself.

Self-monitor. Be aware of your own emotional state – and whether you might be especially vulnerable
to stressful thoughts so that you can be mentally prepared to manage them. And staying aware of what’s going on around you to discern where your mental energy needs to go and where it doesn’t. When you’re not awake, it’s like being trapped in a pinball machine, getting bounced here and there and back again. You can’t control your thoughts, but you don’t have to let them control you.

Manage Your Anxiety

Use your breath. Anxiety can get the best of you if you allow yourself to get caught up in the rush of anxious feelings and don’t maintain your perspective. Say to yourself: “Yup, I’m anxious.” And then breathe it out. This will help you to stay in the moment and not get caught up in anxious thinking that can lead to more anxiety and keep you stuck in that anxious place.

Ask yourself a simple question: What’s the best way to channel my anxious feelings? Think about constructive ways to put your anxiety to use and to distract yourself at the same time. Is there a task you could get involved in to take your attention away from anxious thoughts?

Turn it on, turn it off. Think of your anxiety as a laser beam, and decide where it can be put to the best use. Turning the beam on yourself, and amping up your anxious feelings by letting your thoughts run amok, isn’t the best use. When you’re feeling anxious, visualize yourself holding that laser beam. And remind yourself that you have a choice where you focus it.

Keep Calm

Withdraw if you need to. Move yourself out of the center of the action. Physically, mentally, or both. Step back. You can even say something like, “I need a moment.”

Use your breathing. That initial emotional rush can be overwhelming. Notice how you’re breathing. Little short breaths? Not breathing at all? Take a series of deep, calming breaths. In through your nose, out through your mouth.

Do things that calm you down. Listen to music. Take a walk. Read. Do some relaxation exercises. Anything that helps you to stay calm, that helps you feel connected to your center. Calming yourself down is essential if you are experiencing symptoms of PTSD.

Don’t fight your feelings. Okay, so you’re having a lot of feelings. The worst way to cope with emotions is by pushing them down or trying to pretend they aren’t there. Your feelings are your feelings. Good feelings, feelings you aren’t so proud of. Give yourself permission to feel them all.

Remember that feelings may not represent reality. The feelings of the moment can make the world around you look pretty foggy. You may see things that aren’t real, like what someone else’s motives look like, or where a situation seems to be going. All the more reason to take a pause until the fog dissipates.

If you’re living with a bleeding disorder and an inhibitor, you already know the value of staying connected to your support network. If you are experiencing strong emotions, and especially if you suspect you are experiencing PTSD, it is important to get emotional support. Professional support. Family support. Friends. And other members of the inhibitor community. The same if you are a caregiver. If you are a family member of someone you suspect may be experiencing PTSD, it’s important to get support for both your loved one and for yourself. Don’t go through this alone!

You, your chronic condition, and your mental health. You’re dealing with a lot. And one stressful situation followed by another can take a big toll on your mental health. If it’s all starting to wear you down, do the bravest thing in the world and ask for HELP. PTSD, like other mental health conditions, is treatable.