Hello lovely people, I’ve been reading recently about the trauma resulting from living with chronic illness. It seems there is a growing body of research acknowledging the traumatic effects of living with a threat that resides in your own body (something they’re calling Enduring Somatic Threat).
I think this could resonate with many members of our community. Traditional PTSD is about external threat, eg. war, violence, natural disasters such as bushfires. Recovery from PTSD is usually about getting into a safe situation, then reminding your brain over and over that you are, in fact, safe.
But we can’t do this with chronic illness. The threat is not external; it is internal. We can’t get out of that unsafe situation. We can’t tell ourselves we are safe, when the illness threatens to flare at any moment. This is a whole other level of PTSD. This is the article I first read about it:
Does this resonate with anyone? I can certainly relate. Ever since I was off work last year for nearly six months, for a flare that had no apparent cause and never got diagnosed, I have been living with the fear of the same thing happening all over again. Even though I have more or less recovered and returned to my normal hours at work, the reality of ‘next time’ lurks in my mind. I have recurring dreams about going to hospital and I don’t know what ‘safe’ even means anymore. Having my job hang in the balance for 6 months last year was agonising; I cannot fathom going through all that again.
I am usually an optimist, but lately, when things are going well, I’ve started thinking ‘It’s too good to be true.’ Does anyone else live in fear of health things going horribly wrong, even when things are going OK?
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I understand where you are coming from and I would recommend looking into acceptance and commitment therapy it’s a psychological talking therapy designed to help us living with someone we can’t change such as chronic illness and learning to still live happy in line with our values so we don’t lose out on more than we need to it’s a great model!
Absolutely. I was diagnosed with PTSD earlier this year because of my disease. My anxiety was so extreme, and was almost unable to leave the house. I had been enduring Lupus since 2017, was told it was in my head and had little support from my family. People very close to me said some pretty ugly things about me. Even after my diagnosis in 2020, I still had a large section of my family treat it as if it wasn’t real. That and not being able to work/fend for myself was a lot. Enduring the every day chronic pain, getting little to no sleep, for years was a lot. I started therapy earlier this year and medication, and it has helped tremendously! I am doing so much better now. My heart goes out to my chronic illness warriors, things can get better💜
Thank you BigOofers, I’m so glad you are seeing some positive changes in your life! That must have been really rough, losing sleep and work and your independence with negligible support. Few people can really understand what it’s like to live inside our skin. Glad I’m not the only one. ☺️
There's a grieving process too for the life you could have had if lupus wasn't a thing. Anger denial acceptance etc etc . Perhaps recognising which stage you're in would help.
Hi I can totally relate to you, when you have such a long spell of illness and feeling unwell everyday you can't actually believe when you feel normal for a day, its then when you realise how you've spent so long fighting every day fighting just to get through the day in pain and everything that comes with, but then you see how sole destroying it is and how poorly you've actually been, it does sort of bring a greater anxiety to mind that how long will I feel normal for and when will the nightmare return, I've never had no more than a few days of feeling normal like how I used to be for long time now. I fear any virus, cold, flu, covid symptom so much so I'm petrified It will make me really poorly more so the chronic side effects that last weeks months later, it does get you down but I allways have a little hope that everyday you fight and win somehow managing to get through each day means you've won and each day I think wow i managed yesterday/today so I can do this again today and so on. Sending lots of love and hugs 🫂 😘 xxxxx
Exactly, Danimccrea. ‘When will the nightmare return.’ I have trouble believing this ‘remission’ will last. I know how to get through this—one day at a time—but it still haunts me, you know? Thanks for mentioning the fear of flus, my bad flare last year was triggered by an innocent cold. It wasn’t even COVID-19 or anything. It was a stupid cold, and I was off work for 6 months. So yes, I understand the worry around getting sick again! We’re all just trying to get through each day, aren’t we?
this is amazing! Thanks for sharing, I’ve never really thought about this side of ptsd. I read the link and it is so my daughter! Some of the things she often says “I’m not calling the doctor, she’ll tell me off for not taking my medication”. Or “ i hate my tablets and insulin they make me sick”. (Shes in her 40s) I knew she suffered with depression, but it makes sense that having an illness that’s never going to go away….
Yes Chris21, I am glad your daughter has such an understanding person to support her! Depression is common with chronic illness, and so is trauma, so I understand when your daughter shows reluctance to see the doctor or take medication. I can relate to her experience. Some of my meds have made me sick enough to go to hospital. And I pick and choose when to go to the doctor, simply because I have been to the doc so often I’m thinking of setting up a permanent bed there. There are weeks where I have a medical appt every single day. Medical burnout is a thing. Glad the article was helpful! Let me know if your daughter reads it and if she finds it helpful. ☺️
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