PTSD with Hepatitis C or Cirrhosis – Post Traumatic Stress Disorder is usually thought of as a result to a life changing event that is beyond the ordinary. What about PTSD with Hepatitis C or Cirrhosis? We tend to think of people who have experienced violence in war, a fire, flood or some other disaster when we talk about this disorder. It triggers flashbacks, seemingly uncontrollable emotional responses, physical reactions, or even the lack of emotional response.
Can a person with an acute or chronic illness have PTSD? What does it look like in the life of someone who has been diagnosed with liver disease? Could YOU be suffering from PTSD with Hepatitis C or Cirrhosis?
I recently went back to the primary care doctor who had treated me for over 20 years. She has treated all of my family for many years. She knows everything about my health history. She was also the one who sent me to the hospital when my liver decompensated. She was there when I was diagnosed with Hepatitis C and End Stage Cirrhosis.
I could not make myself go back to her during treatment. It reminded me of all those years of misdiagnosis. There was too much pain, too many horrible memories. But when I had to choose a new primary care doctor, I didn’t feel like doctor shopping. I called my old doctor back. Walking into her office and seeing her again brought on such overwhelming feelings of loss and grief – and strangely enough – also relief. I was overcome with a wide range of emotions. The last time I was there, she told me to go get the transplant work up and expressed hope that I would somehow be able to treat for HCV.
The tears were springing from my eyes and I was shaking as she congratulated me with a big hug. As we talked about my journey to becoming free of HCV, I gradually relaxed. Her joy and relief at my success made me look at what a huge battle I was winning. She seemed genuinely surprised that I was alive, running 5K’s, and working full time. I sensed her pride and awe.
During our conversation, I blurted out in my usual Karen way: I think I have PSTD. She looked up from my chart with shock and surprise. Then we both burst out laughing. She asked if I meant PTSD. Yeah. That. I don’t have an STD – sexually transmitted disease. We discussed the reality of my mental and emotional response to living with Cirrhosis. It was a laughable moment, but also one where I looked at the truth of how mental stress and physical pain affected my life. A crisis can provide us with the chance to stop and see a situation for what it is.
In a crisis, be aware of the danger–but recognize the opportunity.” John F. Kennedy
Let’s start by looking at some symptoms of Post Traumatic Stress Disorder:
Being emotionally numb
Depression that stays longer than a day or 2
Inability to remember events related to the tragedy
Feeling distant from or avoiding people involved with the crisis
Frightening thoughts leading to inability to focus or concentrate
Anger, frustration, and mood swings
Feelings of guilt, loss, and powerlessness
Inability to concentrate
Avoiding people or events that trigger reminders of the pain – leading to relationship problems
Nightmares or insomnia
Body aches, sensitivity to pain
Need for drugs or alcohol to numb mental, physical, or emotional pain
That’s just a few of the symptoms. I think this short list describes a lot of what many of us experience pretty frequently. Honestly, these are the things that I struggle with in one way or another on a daily basis.
Because the symptoms of the Hepatitis C Virus are often silent for many years, we are unaware that our liver is under attack. We muddle along blaming our physical problems on lack of sleep, not eating good enough, genetics, or even menopause. We are often misdiagnosed for years while we struggle to feel better.
Once we are diagnosed, it changes everything. Finding out that there was a reason for our lack of physical or mental strength is so validating. It is also very sad. Not to be a Debbie Downer here, but it IS a trauma in our lives.
Facing that truth has caused me to think differently about how to recover my life now that I am free from Hep C and living with Stage 4 Cirrhosis.
Here I go again. You know that I look for a solution every time an obstacle is placed in front of me. I’m on a mission to live my best life and I invite my Best Friends to go along with me. How can we begin the process of recovery from PTSD while living with liver disease?
I’ve got a plan.
“Through each crisis in my life, with acceptance and hope, in a single defining moment, I finally gained the courage to do things differently.” Sharon Rainey
Treating Post Traumatic Stress Disorder is not easy. There are a few steps, but each person must decide through trial and error what works best for them. I will list several steps and then tell you how I am approaching it.
1. Medication – There are anti-anxiety and anti-depressants that doctors use to keep the symptoms under control. They may be used in addition to other therapies. It may be that you need them for a short period of time, or you may opt for long term use.
2. Cognitive Behavior Therapy – This type of therapy teaches new skills that will help a person to cope with triggers. It may include using words or images to remap your thinking in response to the pain associated with the stress of living with a liver disease.
3. Individual Therapy – Going to a counselor, pastor, psychologist, or psychiatrist may provide assistance and get you the individualized help needed. A mental health provider is usually available in any city or perhaps just the caring guidance of a pastor who is willing to listen and provide good advice and support while you address your stressors.
4. Group Support – This usually comes in the form of a small group that meets to discuss problems. Many people who have a common background or trauma have successfully shared ideas and healing together. Alcoholics Anonymous, Celebrate Recovery, Hepatitis C support groups, or even classes that meets at your church are always good places to start.
The first step in recovering from any problems is admitting that you need some help. Admitting that you are in pain helps you to gain perspective. Instead of seeing yourself as broken, you can begin to see yourself as needing a healing.
I knew from the beginning of my diagnosis that my mind was a mess. The entire ordeal was, and continues to be, very traumatic for me and for my loved ones. I started out by confiding in my close circle of friends. They held me accountable to seek healing physically, mentally, and spiritually. When I got the death sentence, I kicked into high gear by working hard on these 3 areas of my life.
While going through treatment, my physical health was the big priority. I had to work on my mental health at the same time in order to continue treatment and work full time. I read and journaled continuously, setting goals and aiming toward the prize of living! It has worked for me so far.
I have added a couple of new friends who have experience with Hepatitis C and Cirrhosis that I met on the internet. My facebook friends, and YOU – my best friends are also a source of information and encouragement to me on a daily basis. I see that many of us deal with the problems of PTSD in our lives as we work to get treatment, transplants, or just to deal with the trauma of living with liver disease.
As I now battle the daily stress of fatigue and health issues, I do not let a day go by that I am not working on myself spiritually, mentally, and physically. I simply have to find ways to cope with the intense feelings associated with my diagnosis.
The most helpful for me is being more aware of my feelings and changing my thoughts. If I go around reacting to every negative symptom or the feelings surrounding my symptom , I am doomed.
That old song from Hee Haw could describe me on some days:
Gloom, despair, and agony on me.
Deep dark depression, excessive misery.
If it weren’t for bad luck, I’d have no luck at all…
You know I put in a short video.
No. I will laugh at those lyrics, but I will NOT live them. I hope you don’t either. You’re not alone. We can gain control of our PSTD with Hepatitis C and Cirrhosis. Together in the battle with all my love, Karen:)
Pics via stiggydogs.org, traumatotriumph.org,beyondtheborderline.org,
16 thoughts on “PTSD with Hepatitis C or Cirrhosis”
I hear you Karen.
My mum is awesome and she is a social worker so I have an aversion to names and labels for mental health conditions. But if you break it down finding out I had a debilitating and potentially deadly illness led to an extremely delayed (post), realization that caused grief, resentment, confusion, denial, escapism….. (trauma and a whole lotta stress) and my life became , chaotic, illogical, more self destructive, isolated, depressed, all in all (disordered).
I’ve mentioned before that delay and denial has only increased a heavy mental burden and a frightening physical one.
Fortunately a downward spiral has transformed into a steep uphill trek (with an excellent view at the top and some beautiful scenery along the way, even when its foggy).
Some of the cool travellers I have met on the trail make trip more interesting too.
Back to PTSD and just about any other diagnosable condition, the earlier intervention and treatment is used, there is less damage done, less treatment required and better chances of optimal recovery.
love and smiles
Guido
Guido-
You’re fortunate to have your mom to help you navigate some of this stuff! You definitely have learned the lingo. Don’t you think that most of us just bobble along until we HAVE to learn the vocabulary to deal with all of our medical issues?
Gaining self love and exercising out will power are huge steps out of the muck and mire of a mental mess. I got stuck on M’s there for a minute. Like you, I ramble. lol.
Thank you once again for providing encouragement to early intervention for recovery from physical and mental pain. It’s just what someone needed to hear today.
Your friend on the trail,
xoxo Karen:)
Karen, you are so right on about PTSD! I am able to do equine counseling at my job. I am convinced that you can get more out of one session of equine therapy then you can get from 5 individual counseling sessions. I am now 2 and a half months out of treatment and can’t sleep, can’t think, am hypersensitive Etc. i love your posts!
Lora –
Horses are amazing healers. They are so large and strong. Just like the problems we face in life. But with the right training and persistence, they can be tamed.
How awesome that you are involved with equine counseling. It builds so much courage and trust in the individuals. I’ve worked at camps for children with Autism and seen amazing results. I’ll bet you have many good stories of healing for yourself and others. I’m so blessed that you shared that with us.
I’m 1 1/2 years out of treatment and still dealing with cirrhosis. I still have hypersensitivity to certain stimuli too. I can only take so much and then I bury myself in research and writing. lol. I’m so very glad that it helps you too. xoxo My Friend, K:)
Hi Karen! I guess a lot of the PTSD symptoms I experience in my daily journey are on your list.
I have to wonder if it is HE or PTSD. Maybe even fallout from alcoholism but I struggle daily.
I wonder if anyone qualified will help me figure it out. Maybe if I stopped wondering and took some action I will find out. Thank you for making sense. I have to see Liver Clinic and PC Clinic between now and Thanksgiving. Maybe they will have some insight.
In the meanwhile I will stick close to my HCV support group and AA and keep reading your blog.
Thank you for all that you do! I am speaking at a major AA speaker event this weekend. Lots of people to reach out to…. Wish me luck!
Joe –
I think that it may be difficult to get a diagnosis of PTSD. My daughter works in the mental health field and we have talked about it quite a bit. When I brought it up to my doctor, she said that it was quite possible that people who have a life threatening illness also have PTSD.
The different ways of treating it that I mentioned are often already used by those of us who have dealt with Hepatitis C or Cirrhosis. You are already getting treatment, so to speak, since you are getting good counsel through your AA meetings and taking an active part in an HCV support group.
Life itself gives us plenty of opportunities to experience stress and working on our mental health should be a part of living. Many times, it is overlooked and we just keep adding ways of coping. As long as our skills for coping are positive ones, we gain new ways of minimizing stress. You have been faithful in doing that for quite a few years now and that is why you have so much to offer those who you work with in your work with AA.
I wish you all the best as you speak this weekend. I know that you will be an inspiration! Teaching others about what has worked for you can help them to get a better understanding about how to deal with addictions by staying with counseling, small group support, and medication if needed. Bravo Joe! I love you brother.
My heart goes with you will admiration and support,
xoxo Karen:)
I am not even going to insult you here Karen and say I know what you’re going through because I don’t have a clue. I can’t imagine that diagnosis anyway and then everything you’ve had to go through. I’ve heard about PTSD but I did think it was associated with traumatic events. I think it makes sense that you would have that too.
What I so admired from you though was that you’re the one that told your doctor that’s what you thought you had. You are doing what’s necessary to get the help you need and I so admire that about you. I have no doubt that you young lady will be just fine.
Thank you for being so open about this and sharing with us what your struggles are.
~Adrienne
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Adrienne,
You’re a sweetheart. So many people suffer from this. My daughter is a counselor and proofing her papers for grad school taught me a lot. Who knew that I would be the one dealing with symptoms of PTSD?
It has become kind of a “catch all” kind of phrase for those dealing with a myriad of symptoms. It doesn’t matter if they were caused by one major traumatic event or a series of smaller events. The results are the same.
I took a few days rest and even spent a day in a yoga/prayer retreat. Contemplative time always renews me spirit, mind, and body. I hope your weekend was awesome dear friend. Your sweetness always brings a some tearing up to these eyes.
Xo Karen
Hi Karen,
Each time I visit your blog and read all that you share – it inspires me to carry on, especially when I know you are carrying on your end so bravely 🙂
Although I don’t know very much about PSTD with Hepatitis C and Cirrhosis, except all that I read at your blog and a few cases of friend’s, I do know that they can sap out the strength and energy levels, and if you don’t remain boosted up, it can get pretty tiring for you. I have an uncle who has got Cirrhosis of the liver, yes, that’s come up due to his bad drinking habits, and now he has to be on medications life long. We just hope he doesn’t get worse.
Ah…I can sure relate to the symptoms of Post Traumatic Stress Disorder – because I go through some of them myself, or perhaps it’s more stress based as I’d say it was. And I do agree with you – friend’s play a major part to pull you through these low phases of life – after all, that’s what friend’s are for, isn’t it?
Thanks for sharing this with us. Have a nice week ahead 🙂
Harleena Singh recently posted…Quality Of Life – Let’s Understand It Better
Harleena –
Good morning. About your uncle – the liver will regenerate! If he stops drinking, eats well, and takes his meds he can live a long time. See, I don’t think my liver will get any worse because I never drank and the HCV is gone. Living with liver damage just requires a lot of diligence. That’s probably what keeps my nerves jangled – living with the fear that if I do something wrong, I might die.
And yes, I agree with you that we all live with stress every day. It’s part of the human experience! Just a day in the life of most people are full of those little stresses that can add up quickly. I love the fact that your blog is full of ideas on coping with just being human. I know that it benefits me and countless others world wide. I’ve been digging in your archives…
I trust your heart dear friend. That is stress relieving in itself!
xoxo Karen:)
Karen, You are a true inspiration! I have a lot of those symptoms. It makes me wonder if I’m being misdiagnosed. I have fatigue, pain, migraines and digestive problems. They say I have Crohne’s disease, fibromyalgia and migraines with aura and arthritis. 19 years ago I fell 3 stories flat on my back. Needless to say I have back problems too. I take many supplements and do the “clean eating”.
I’ve recently started college, I hope and pray I can continue on and keep my health at the level I’ve worked so hard to get to. I didn’t realize you worked full time. How do make time for everything? It’s been 2 weeks and i already feel like a ghost of myself!
Thanks for your lovely inspiration each day 🙂
Sheri,
So glad to see your comment! Misdiagnosis is the pits. I was tested for so many things and we kept chalking it up to menopause. The symptoms are just so vague, aren’t they? Crohne’s and autoimmune diseases really are hard to pinpoint. I’ve never had a migraine, but one of my employees had them years ago and it was debilitating some days. She had to take injections for them. I am so sorry for you on that.
I would have never guessed you battled health problems by your healthy lifestyle. In truth, the way that you approach healthy eating and exercise is what drew me toward you from the beginning! I am convinced that nutrition is key in overcoming our physical battles.
Yes, I am in the classroom. It’s part of my salvation, but it also wears me out! Like tonight! lol. I am proud of you for going ahead with your goals and plans. You will look up in a few years and be finishing that diploma. The time will pass and your body may struggle whether you are in class or not. I am cheering you on in my heart.
About the ghost. I get that. While on a chemo type treatment, I was sleepwalking some days. You inspire me with your treadmill! lol. And your shakes. We’re gonna do this dear Sheri.
It’s a pleasure to know you dear friend,
xo Karen:)
Thanks so much for your encouraging comments. Wow, you really brightened my evening. That’s also why I was drawn to you. The way your dealing with your issues is so positive! Your amazing! I also think it’s in nutrition. 4 years ago we thought my only future would be going on disability. I fight everyday to make myself do all these things.I have learned if don’t do them I will suffer more. Posting keeps me accountable and on schedule.
I have lots of recipes, drinks & smoothies, diy lotions and scrub recipes on Pintrest. If you are interested in looking, I’m Sheri B. in Memphis. It’s all free, helpful stuff! I collect at all there! Thank you, your awesome 🙂
You’re so welcome Sheri. You brightened mine too. The mental battle is often the hardest part. Once we make the decision to get up and make the best of it, we can develop a strategy for healing. I’ve been offered the disability too. I decided to push. Like today!
I agree about the accountability. It helps us to mentally recommit every day. I can’t wait to spend some time on Pinterest now! I’ll look you up! I hope you have a great weekend planned. I slept good last night and am heading out for the day! I hope every test (in school and life) will make you smarter, stronger, and more determined then ever.
You’re awesome! Karen:)
It certainly made me stop and think. I certainly have several symptoms. My wife says I am a different person now. I’ve blamed it on HE… Now I wonder. I don’t think I suffer with depression but occasionally will find myself becoming anxious if I think about the future too much. I am always thankful but I do wonder…. Thank you for your wisdom and for sharing it.
Joel
Joel,
It is so hard for us to see it when we are in the middle of brain fog. I look back now and it is clear that my thoughts were not coherant at all. Now, my daughter will bring it up to me. She will point out that I am looping in conversations. My husband also gently reminds me that we DID have that conversation. I am always embarrased.
It is almost like we have to work overtime just to try and stay on top of things. I know that most people my age do anyway. That helps me to brush it off and keep going. But I also don’t want to ignore symptoms and let it get worse. I continue to research and write about all of this in an effort to understand.
Comments like yours really touch my heart. We are all hurting. But we are pressing on! Let’s keep at it and have a beautiful future. It makes me feel good to know that you are determined to heal and move on also.
All my best to you,
xoxo Karen:)
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