Trauma, Stress and Chronic Health Conditions

"Scholars have long known that people who live with chronic illness are at a greater risk of experiencing PTSD-like symptoms. However, the trigger for these symptoms is not a one-time event that occurred in the past; rather, chronic disease is an ongoing threat to safety. Researchers thus have proposed a model of PTSD that accounts for this difference entitled the Enduring Somatic Threat ("EST") model of PTSD." (Virant, K.W.)

I have been living with diagnosed chronic health issues for almost 10 years, but the pain and emotional turmoil that comes with chronic health issues started years before, when the symptoms first began but we didn't know why they were happening.

Nine months ago, when I had surgery for a J Tube to be placed, I had no idea the emotional and physical trauma that would come with it. Sounds silly to say that statement out loud. In fact, I almost question myself for saying it. I mean, it's a physical object coming out of your stomach, why wouldn't there be physical tand emotional trauma? Maybe I was just in denial. At the time, I was looking at the feeding tube being another side effect of a new chronic illness diagnosis. With every new diagnosis, you face new challenges. The feeding tube was never supposed to be permanent and in the beginning, I kept telling myself that. The feeding tube was just something I needed to deal with while we figured things out. Needless to say, that as the couple weeks to a couple months my doctors expected me to have the feeding tube turned into months, my hope diminished.

You don't have to have something coming out of your stomach for you to experience trauma or develop anxiety. For years, I have dealt with chronic illness and I know there are certain situations that I feel I sometimes need to mentally prepare for. Although, the feeding tube is what pushed me to realize all of the trauma I have dealt with for years.

For the last 9 months, I have been living with a feeding tube coming out of my abdomen. To say that brought physical and emotional trauma would be an understatement and I never would have realized it affected me so much, until I was told my feeding tube was being pulled. For the last 9 months that is all I wanted, to have my feeding tube pulled. The second I was told let's try and start eating and we can have your feeding tube pulled in 3 weeks, I started panicking.

"Wow 3 weeks. That seems too fast. Shouldn't it be longer? After all, I have to try a variety of foods. What happens if it gets pulled too soon and I have to do this all over again? All I have wanted it to have this thing out and now I'm terrified why is that?"

To say my mind was racing is an understatement. The first time I went to the grocery store to figure out what I was going to eat, I started crying in the middle of an aisle. I didn't know what I was supposed to eat or where to start.  Anxiety is real and the stress and trauma of having a feeding tube finally pushed me into admitting the truth: Chronic Illness is traumatic, and can cause severe anxiety and stress.
Anywhere from 12-25% of people with chronic illness have developed medically induced PTSD. Unfortunately, I am now considered a part of that statistic. When I was first told I have PTSD, I hated that it had even been brought up. I felt (and still do) that there are other people who have been through so much worse than I have, maybe they have PTSD but I don't. I'm just dealing with a little anxiety.

For some with chronic illness, the trauma they face is not so much about their illness but about the people around them and whether or not their family and friends actually believe them when they are going through this terrifying issue. For others, it's the actual effects the illness has on their lives.  I have met people who are terrified to leave the house, what if they pass out and wake up in an ambulance? Or what if they aren't close enough to the bathroom when they need one?

Medically induced PTSD means our trauma is coming from our own bodies and our brains don't perceive our bodies as a safe space. Re-experiencing is a mental version of re-living the trauma you are experiencing. For a soldier, it may be a loud noise after he or she is back from war, could trigger their PTSD. For someone who has medical induced PTSD, they are re-living their trauma everyday. It's hard to escape it when your chronic illness affects you daily life. Sometimes to escape that trauma, those with chronic illness will avoid taking meds, doing their therapies or going to doctor appointments because they don't want to deal with the anxiety associated with it.

I'm not going to lie and say that the last statement above doesn't apply to me. In fact, when I first got the feeding tube I kept asking my mom if I had done this to myself. I had been experiencing pain for awhile and just didn't want to deal with going to the doctor only to have him tell me that my pain was just a flare that I had to wait out. Had I done this to myself? Well, of course not, but it's hard to not think like that.

For me, my health has always gotten the better of me, but I have always tried to remain positive with each new diagnosis and figure out what this change means for my life. With the feeding tube being pulled, you would expect excitement. Instead of a new diagnosis, I was "catching a break" and getting the opportunity to experience relief from one of the most trying things I have experienced in my life. However, just because my feeding tube was pulled, I'm still having multiple doctor appointments a week, and now I'm having to try and eat food. Something that put me in the position of needing the feeding tube in the first place.

Since the feeding tube being pulled, I have realized just how much chronic illness has affected me. In the past, every time I thought I had my life finally figured out with my health, all of a sudden the rug would be pulled out from underneath me. Now that my feeding tube is pulled, I'm having a hard time looking for the positive; and instead, I am just waiting for the other shoe to drop.

My daily life now consists of one meal a day. I usually can only handle one small meal and I'm pretty full for the rest of the day. I also now walk 3-6 hours a day and see multiple doctors and physical therapists a week. I thought having the feeding tube pulled would mean the doctor appointments would slow down but they haven't. The walking was to help me maintain good digestion. I was up to between five and six hours of walking a day and I have slowed down. But I haven't been able to bring myself to come down lower than three hours of walking a day. I am absolutely terrified of what is going to happen if I go below three hours and start having problems again.

So, I'm going to end this post with something I have said before, and I promise I will say again...Just because you can't physically see something wrong, doesn't mean the person you are looking at isn't fighting an inner battle. Be kind to each other and think before speaking.


I encourage you to read more on PTSD and Chronic Illness in this article from Psychology Today: Chronic Illness and Trauma Disorders.

Source: Virant, K.W. (2019). Chronic Illness and Trauma Disorders. Psychology Today.

Be Kind To Others. Be Kind To Yourself.

Over the last few months of 2019,  a majority of my friends began posting photos and comments associated with each photo for the "Decades Challenge." For those of you unaware of this challenge, it just means that there were several people who posted a picture of themself in 2009 to show where they were when the decade began and the hopes and dreams they had for their lives, and then they also had a picture from 2019 showing where they are now, what they accomplished and/or built up in the last 10 years of their life.

As happy as I was for my friends (and still am), I found myself jealous, not because of their accomplishments, because I am so thrilled for them. I was jealous because they had the OPPORTUNITY to work towards those accomplishments. Meanwhile, I was never given the chance to have that same opportunity. Furthermore, while I was looking at these "Decades Challenge" posts showing my friends accomplishments in their personal and professional lives, I was sitting next to an IV pole with a feeding tube going through my abdomen into my intestines to provide me with the necessary nutrition I need to survive. Something my body couldn't do on its own. 

The milestones in my life are drastically different than my peers. My best friend got engaged on the same day I had a surgery. Meanwhile another friend had a baby while I was getting yet another CT scan because we didn't know why the pain hadn't gone away with surgery. I get that life is supposed to challenge you; however, to me, it felt like my life was out to get me and the more I saw the "Decades Challenge" posts, the more I thought about everything I was missing or had missed in the last 10 years. 

So, here's my "Decades Challenge"...

Me in London in 2009

In 2009, I was in college. In fact, I was studying abroad in London. I was loving every minute of it and had even surprised myself with the simple fact that I had taken a risk to go there on my own for several months at a time. Taking big chances has never been something I have been known to do. While there, I made new friends, people I still stay in contact with today, and traveled to different countries to experience different cultures and see the world. Short of getting the flu, or being a huge klutz (which still followed me to London unfortunately), I hadn't dealt with a serious and personal attack on my health. 

I had been experiencing random pains my first semester of college in 2007, but by 2010 I was definitely sure I was dying. The word miserable doesn't begin to describe how I felt. And that is when my health journey began. Everything came to light in 2010 and by 2019 I had been diagnosed with 11 chronic illnesses in 9 years, making 13 the total number of chronic illnesses I now have. While my friends were advancing in their careers, settling down, getting married, having kids and even buying their first homes, I was having surgeries, multiple procedures, blood draws, fights with insurance and enough doctor appointments to fill well over five lifetimes. I was, and still am, fighting for my life. 

Me after taking meds through tube feeding September 2019

It's hard not to think about what you are missing, or should have done when you had the chance while lying in bed for months on end, not able to do much. I worked when I could and did everything possible to prove to myself, my illnesses and everyone else that I wouldn't take my illnesses lying down. But I have to be honest, 2019 knocked me flat on my back and made it feel like I would never be able to get back up. And for me to be honest with myself,  I need to admit that I didn't want to get back up. I didn't have any fight left in me. In fact, I told my mom I was ready to give up and I have never been more truthful in my life.

So, here's my response to the Decades Challenge: 

My health has kicked me while I am down more times than I can count. While I was once a shy, but motivated young woman, I am now strong emotionally, mentally and in my faith, have found my voice and learned how to use it, and have found ways to love myself and my body despite the number of times it has revolted against me. No, I don't have a house, kids or the job I always dreamed of, but I have still accomplished things my healthy friends have. Like my friends, I have grown and learned a lot about myself and my strengths and weaknesses along the way. I've learned that while my friends can go do something fun all day, it is going to take a lot out of me and if I try to keep up with them then it will put me into a huge flare and keep me in bed for at least a week. I've learned it is okay for anyone, not just those with chronic illness, to take a break, rest and try again the next day. 

Credit: The Minds Journal

Fast forward to now, it's the beginning of the year which means people are making New Year's Resolutions and while most make personal goals to improve what they are doing, keep the house cleaner, go to the gym more, or have less screen time and more time with family. My health has taught me that life is short and hope, health and happiness can be taken away all too quickly. 

I know you have heard something similar a million times, but I'm going to say it anyway. Remember that just because someone looks healthy and happy, doesn't mean they truly are. They may be secretly fighting a battle on their own. And just because I am more than willing to be open about what I go through and hopefully stop the stigma associated with chronic illness, others are more reserved and you would never know. 

So, while making your New Year's Resolutions remember to include this one: Be Kind (thank you Ellen DeGeneres) and be generous. Think before speaking. Think before acting. You may be annoyed and think someone is taking advantage when they park in a handicap spot and walk into a store without mobility aids, but you don't know what they had to do just to get to the store that day and how much they are going to pay after. Taking it a step further, for those going through hard times (and even those who aren't), remember to Be Kind to yourself. 

"It's a little strange to actually get an award for being nice and generous and kind, which is what we're all supposed to do with one another. That's the point of being human."

-Ellen DeGeneres