Facing challenging health issues

[Eagle Ray]

I wasn’t sure where to put this post. Will just mention that for anyone with health anxiety it might be stressful, just so you are aware if you would prefer not to read it.

As I’ve written elsewhere in the Trauma/PTSD section I’ve been diagnosed with an autoimmune liver disease. The specialist gave me fairly depressing info at the start, that I had about 10-12 years before I’d need a liver transplant to stay alive. Through my own research and a helpful support organisation I’ve learned this is not necessarily true, and many go on to live a fairly normal lifespan. So I felt like I was coping ok with it and there was hope.

But over the last year or so I’ve experienced increasing periods of quite severe shortness of breath. Heart tests last year showed mitral valve regurgitation. Pulmonary hypertension (affecting the lungs) has an association with both the liver disease and mitral valve dysfunction. I’m going to contact my GP for possible further testing as the symptoms are now worse than last year.

But my reason for posting is if it is pulmonary hypertension the prognosis is not great. It’s described as a universally fatal disease and without treatment death can be in 2-3 years.

 I know I shouldn’t get ahead of myself and I know the initial info I was given on the liver disease was not entirely accurate, so if I do find out I’ve got  pulmonary hypertension it’s not necessarily the end for me.

But I just felt the need to post as I live alone and deal with all these things on my own. I have to advocate for myself with medical professionals but it feels such a lonely battle at times. I don’t tell much to friends or relatives as I don’t like to worry them or bring bad thoughts. But I’ve had the strong feeling in the last year and a half I’m facing my own mortality. I guess I just feel alone with it.

Is anyone else dealing with similar issues and what strategies have helped you manage any health anxiety? I have a trauma history with a lot of very stressful experiences throughout my life and sometimes I feel like my body’s had enough and is packing it in.

[Eagle Ray]

Thanks JT

 I do my best to live in the moment. I’m not really scared of death, having been with loved ones at the time of death and just after. I’m more sad for the loss of the ability to do and enjoy the things I love.

I’ve just had one major struggle after another. 17 years ago I had an extremely painful bladder condition where I had to stop work, lost all my savings (just $1.23 left in my bank account) and had to go on Centrelink. There were days I had nothing to buy food. I had to make a choice between rent, food and paying for therapy. I could often only walk as far as the lounge and would collapse in extreme pain, unable to move again for a couple of hours. Other days I could get to the supermarket but could only stand in the aisle for a couple of minutes, beside myself in pain before I’d have to go home without buying anything because I couldn’t keep standing and moving. I was put on a synthetic opioid and another med for pain. I had 3 years of this.

 I fought my way back, with help via the Commonwealth Rehab Service that used to exist and did some retraining at TAFE to go back to work. I couldn’t attend all classes because I was in so much pain, but I finished my certificate.

But I have been through these things so many times now that sometimes the body just breaks down. It’s had enough. And getting the right help is exhausting.

I have to keep focusing on the people who are helpful and on the same page and understanding what is going on. It’s like you have to be relentless to get the right help. I’ve had to do that for psychological therapy (and fortunately found a good psych now) and I’m having to do that for physiological illness. The thing is, there is no mind-body separation and all these things are connected. Some practitioners integrate this understanding, especially regarding trauma, and others do not (often because the system they’re in is not set up to help them to do so).

[jtjt_4862]

Heya Eagle Ray,

That sounds really rough... Sorry to hear about the experiences that you've gone through. You're an amazing fighter to be able to go through all these challenges and still fighting on. It does suck to hear and to know that, our physical bodies will eventually limit us to what we can or cannot do. And if majority of our time is spent fighting and solving all these problems, we start to wonder "When will this be over so I can have the good days to do the things I love?". 

On the topic of mind-body separation, would you care to share more about what you mean by it and how all things are connected? I'm keen to know more about your thoughts on this to get a better understanding of you.

Thank you 🙂

JT

[Eagle Ray]

Hi JT,

By mind-body separation I mean that conditions can be split off into either a mental issue or physiological issue. When it comes to trauma this is a particularly fraught approach. PTSD, for example, derives straight out of a physiological survival response that’s basically got trapped in the person long term, with the emotional distress that’s part of that. Cognitive approaches to trauma have never worked for me, and if anything have been further disempowering as I’ve needed to start with where my body is at before I can even bring any cognitive shifts into practice. I’ve long intellectually understood what’s wrong, so things like CBT never helped because I already get what’s going on cognitively and behaviourally, but was still physiologically stuck in an automated survival response. Now I’m working with physiology and making real progress - moving through trauma resolution.

Likewise, the medical health issues I’ve had have not been greatly helped being treated purely medically/physically without understanding the impact of trauma on the nervous system, especially chronically over time. I’m finding I have to consult more holistic practitioners to get a more mind-body integrative perspective on conditions that doctors often treat as purely a physical issue, or alternatively a psychosomatic issue without a physiological basis (to them if their standard diagnostic tests and examinations don’t indicate something they can give a treatment for).

 I’m not sure if I expressed that very clearly, but basically we are never a separate mind from body. Our physiological responses deeply affect our emotions and our emotions deeply affect our physiology. They basically move as a single unit. I’ve read of other cultures where the mind is often thought to reside in the heart. This is not far-fetched at all as we have neurons in our heart and gut, and the vagus nerve is the  means of communication between our visceral organs and brain. Our emotions are in our gut, heart, liver etc. 95% of serotonin is made by gut bacteria. So mind and body is really just one thing.

[jaz28]

Hi Eagle Ray,

I am sorry to read you are experiencing anxiety over your health. It is never fun.

I also have an autoimmune condition similar to Crohn's disease, if you may have heard of that one (most haven't heard of the type I have), so I know how it feels to be told you have an incurable disease. The worst-case scenario for my condition is surgery, which I had to have nearly 2 years ago when no medications worked. But, my condition is not life-threatening and we can live a normal lifespan despite all this due to modern medicine. I am sure modern medicine is on your side, and you never know what treatments are/will become available. I know someone who had autoimmune hepatitis, and she managed to overcome it when she was on the brink of a liver transplant, so I have faith that you will be okay.

I think it is great you are seeking further tests for your breathing, I think advocating for yourself is so important. But I found that it is safe to not assume to the worst-case scenario, and let the doctors take control. 

I manage my anxiety with my health by trying to detach from overthinking, and just live my life and see my doctors if I need to, once I have advocated for myself, it is then their turn to find a treatment for me. I thinkl seeing a psychologist could be beneficial for you too.

I hope you find answers soon,

Jaz xx