PTSD Is Common in Chronically Ill Patients. Here’s How I Address It

Charlene Marshall avatar

by Charlene Marshall |

Share this article:

Share article via email
mold, anxiety, appointments, Rare Disease Day, patient experience, wish list, goals, community, IPF cough, anxiety, holiday season, life lessons, story, cold temperatures, toxic positivity, peer support, before and after, exercise, power outages, productivity

As a columnist for BioNews, I try to write about a variety of topics pertaining to patients living with idiopathic pulmonary fibrosis (IPF), even those that are taboo or difficult to talk about. Not only is this an expectation of columnists, it also can illuminate issues that patients may not have previously understood or felt comfortable talking about.

Despite being a trained therapist with a deep understanding of post-traumatic stress disorder (PTSD), it’s a topic I rarely feel comfortable talking about. However, I’ve corresponded with other patients who have PTSD, so I’m setting aside my discomfort to discuss it. It’s important that none of us feel alone in the battle against this cruel lung disease.

PTSD is a set of reactions that occur after one experiences a traumatic event. I was first diagnosed with PTSD after a prolonged hospitalization as a result of an exacerbation and full respiratory collapse. I spent time in the ICU on a ventilator, which still gives me nightmares. Nightmares are among the many symptoms of PTSD, which can occur long after the traumatic event.

It’s a common myth that PTSD develops only when people experience an outwardly traumatic event such as an assault, war, or a natural disaster. But this disorder can also be a response to how you inwardly experience trauma. For me, the days in the ICU when I couldn’t communicate what I needed or that I was scared and in pain due to the ventilator, was enough to cause PTSD.

Unfortunately, I suspect many fellow IPF patients who have experienced a similar event, whether it’s an exacerbation, transplant, or sudden progression of their disease, can relate to the fear I feel from being so sick. I challenge you to reflect on whether you also might be experiencing signs of PTSD, and to educate yourself about the disorder.

I have wanted to write a column about PTSD for a while but didn’t want to publicly share my struggles with it. Although the cause of my PTSD was entirely out of my control, there remains a stigma associated with any type of mental health disease or disorder. However, my commitment to writing about topics that might help other IPF patients is stronger than any shame associated with my PTSD diagnosis.

I believe PTSD is more common among chronically ill patients than we think. As a result, I thought it might be helpful to write about the ways I combat this disorder. Knowledge is power, and I hope the following tips help you cope with PTSD if you, too, are living with it.

Education

One of the most powerful things I did after being diagnosed with PTSD was reading credible sources to understand this disorder. This made me feel more in control of my diagnosis because I better understood what to expect from it and could proactively plan how I’d handle my PTSD triggers.

Social support

Talking about PTSD and letting others know you live with it is important and is nothing to be ashamed of, regardless of what traumatic event caused it. If others understand you have PTSD, they can validate your emotions and support you if triggers arise. An abundance of literature shows that social support can be a major factor in helping people overcome a stressful event or PTSD.

Self-defense classes

PTSD can be triggered by an uncertainty about how to protect yourself. This is especially true if your PTSD was caused by an event that threatened your physical safety.

In the ICU, I had moments when my hands were restrained because I experienced psychosis from the different medication side effects, and I was at risk of pulling out my breathing tube. My brain perceived this as a threat to my physical safety, even though the intention of restraints was to keep me safe. As a result, my PTSD can be triggered when people startle me or when my physical safety is threatened.

The self-defense classes I took initially weren’t to protect me from others, but to better understand how I could make my body feel protected in different positions to reduce the perceived threat, such as activating pressure points or bear-hugging and turning inward.

Deep breathing and mindfulness

Mindfulness is an increasingly beneficial tool that people are using to help get out of their head and focus on the present moment. In the case of PTSD, mindfulness can bring you out of the state of perceived threat and back into safety. Deep breathing similarly helps you focus on something other than the traumatic event and helps focus your attention.

Please reach out if you’re experiencing signs of PTSD and know that you are not alone.

***

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Comments

Alan Gould avatar

Alan Gould

Please demonstrate breathing exercises

Reply
Charlene Marshall avatar

Charlene Marshall

Hi Alan,

Thanks so much for writing and the request for breathing exercises. You can actually find these in numerous places online! :)

I'd recommend checking out Pulmonary Wellness online, particularly the Webinars section for videos and information on breathing exercises:https://www.pulmonarywellness.com/ . This is also a popular topic of discussion on the PF forums (https://pulmonaryfibrosisnews.com/forums/) and there are some great videos and links to breathing exercises there as well, depending on the type/breathing method you're looking for. Hope this is helpful :)
Char.

Reply
Nadine Fairy avatar

Nadine Fairy

I have debilitating fatigue and fibromyalgia. I did have a mom that was emotionally cruel to me. She only allowed me to go out with a family’s son whom was 4 years old and forced me into sex. Then my husband, who knows we loved each other ended up being diagnosed as schizophrenia with bi polar. I hurt everywhere. At first I was diagnosed with lupus due to high DNA antibodies. That’s gone after taking plaque-nil but the pain is still here and the fatigue. I take lots of medicines.

Reply
Charlene Marshall avatar

Charlene Marshall

Hi Nadine,

Thanks so much for writing, though so sorry to hear of your difficult experiences. That must have been really tough to endure throughout the years! Since your lupus diagnosis, have you been told you have an interstitial lung disease/PF as well? Dealing with pain and fatigue on a regular basis can be so exhausting physically and mentally. I hope you find some relief soon.
Take care,
Char.

Reply
Randall Thornton avatar

Randall Thornton

Hi Charlene. Just reading this about PTSD and got me thinking. When I first went into the hospital in March, they did a covid test. Never waited for any results, just assumed. I was put into a coma with the tubes coming out everywhere and was that way for 2-3 weeks. I was out of it, so don't know what they did. My test was negative so they brought me out of the coma. However, I couldn't talk, was having a hard time seeing and hearing and they wanted me to write things to them. I was scared to death as to what had happened to me and what was going to happen. Since I didn't have covid, I was transferred to a different hospital and then another and finally rehab.
I was never told what to expect as I was transferred and by the time I got to rehab, I was so scared, I had a huge afib attach. Would all this be considered PTSD? Yak at you later, Randy

Reply
Charlene Marshall avatar

Charlene Marshall

Hi Randy,

Thanks so much for reading my columns and reaching out via the comments. I'm glad to hear it helped you give some thought to your experience, but so very sorry to hear that happened to you. I remember that fear you mentioned from not recalling what happened to you; it truly is a terrifying experience. Unfortunately, I believe (this is just my personal opinion) so much stigma and misunderstanding remains around PTSD but it is a very complex disorder that should be addressed. There is a physical component to PTSD for sure, similar to how you described the afib attack. Do you have a social worker following you or could you talk to one of the allied care professionals about the possibility of PTSD and how to help with it? The thing is, PTSD is very "grey" because it is all about how we perceive threats to our body so no one can really say what you "should" or "shouldn't" have PTSD from. For me, it was my ICU visit which sounds very similar to yours. Let me know if this is helpful at all?

Take care,
Charlene.

Reply
Holly Patient avatar

Holly Patient

Yes, I have experienced some of the symptoms of PTSD, or "ICU syndrome." I deal with insomnia, reliving hospital experiences during waking nighttime hours, and nightmares. My pre- and post-transplant hospitalization amounted to about five months, so these effects are to be expected. The symptoms are decreasing with time. I turn to IPF News columns for support, as well as online and zoom transplant support groups. I rely on my family, especially my daughter, to talk things out. I like the idea of mindfulness, dragging my mind back from the bad memories and back to the present. Covid is unfortunately adding to the stress. Vaccines will help!

Reply
Charlene Marshall avatar

Charlene Marshall

Hi Holly,

Thanks so much for reading my column and sharing your thoughts. So sorry you also experience PTSD or "ICU syndrome" too, it certainly can be hard to cope with. I'm really glad you have these platforms to talk through the experience, as it can be difficult to navigate them alone. I had hoped this column, despite feeling really vulnerable writing it, will help others realize its "not just them" and that it is important to talk about PTSD symptoms. I'm glad to hear they're decreasing with time for you too, that is reassuring. Vaccines can't come soon enough for Covid, can they? Stay safe and thanks for writing!
Char.

Reply
Christie avatar

Christie

Charlene, this column is SO SO important. Thank you for being brave enough to share your struggles. You know that you aren't alone, but that doesn't make it any easier to open up. Just know that this piece is going to help many people feel connected and understood. I also especially liked how you talked about self-defense courses and how that helped you to negotiate the effects of PTSD even though it was not caused by an attack. I think the mind-body connection is something we don't investigate enough when it comes to these disorders. Your insight and connectioon of being triggered by being startled or positionally compromised to healing via self-defense training is truly brilliant.

Reply
Charlene Marshall avatar

Charlene Marshall

Hi Christie,

So nice to hear from you, thank you so much for your kind words on my column! It took me awhile to accept the vulnerability that came with writing a column on PTSD, but I truly believe it is important. I've had a few people reach out, now wondering if they have experienced PTSD as well and hopefully with more awareness, brings more help and support. Thank you again - I admire so much of your work, so these kind accolades coming from you, really mean a lot :)
Char.

Reply
Jen C avatar

Jen C

Charlene, I wish I could have read this column earlier. I wrote about my PTSD recently after traumatic hospitalizations. But had talked about it a little earlier in other columns.

You're so brave and I appreciate you talking about this. I had a similar experience in ICU and restrained. Sadly, I didn't get that deep into my details. Since reading your post yesterday describing this a bit, I had it on my list to read.

I applaud you for your courage and vulnerability. Self-defense classes, wow, you amaze me! You are not alone, please know I'm here anytime to talk.

-Hugs

Reply
Charlene Marshall avatar

Charlene Marshall

Hi Jen,

Thanks for reading my column and reaching out via the comments! I'm so glad you found my column helpful, and I'll definitely check out yours too; we all have so much to learn from one another as fellow patients. I'm sorry you've had this experience too though, it is awful and really hard for people to understand who have never endured it. I am here for you too - thanks again for writing and for your kind words. xoox.
Char.

Reply

Leave a comment

Fill in the required fields to post. Your email address will not be published.

Your PF Community

Woman laying down reading

Visit the Pulmonary Fibrosis News forums to connect with others in the PF community.

View Forums