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.

[Beeee]

Hello Eagle Ray,

Thank you for sharing your experience, I can understand that it must be difficult going through all this alone. We're always here on the forums if you would like to continue updating or reach out about anything else. 

I'm glad to hear that you were coping well with the liver disease but understandably, a new diagnosis can throw a spanner in the works. But there is always hope, every body is different and no one can truly know what one's future holds. 

I was born with a heart disease and have experienced health anxiety myself. I do what I can to cope with my illness and anxiety, but there is only so much that is in my control. Understanding and accepting that I can't control everything has been essential to coping. And making the best of what I can control has helped me feel in charge of my body. I try to follow a balanced diet and exercise regularly as these are positive changes that I can make. 

Discussing my fears with my psychologist has also been very helpful. I've learned why I have health anxiety and coping strategies. I read one of your other posts where you mentioned seeing a therapist and doing somatic work. This seems like a great path to be going down. Has it been helping?

Beeee

[Eagle Ray]

Dear Beee,

Thank you so much for your lovely response. I really appreciate the support here. I have a tendency not to share my worries with anyone, but it’s somehow easier here.

 
Thank you for your thoughts about how you’ve coped with the heart disease. Yes, I think accepting what we can’t control while managing what we can control is so important.

 I’m seeing the doctor on Wednesday who will most likely run further tests. If it’s pulmonary arterial hypertension the life expectancy is longer than it used to be with treatment. I also managed to find a research paper describing 3 individuals who made a recovery, which gives me hope.

The somatic therapy has really helped. The first session was her listening to my history (I’ve never had a therapist really listen to me like that before). The second session was addressing the last traumatic incident I went through. I was able to enact defensive responses that I couldn’t at the time. She got me then to do it in slow motion. I was able to turn and directly face the abuser without fear who then turned into a spindly hologram and dissolved. I was left with the peaceful night in the town I was in. I could see flowers in gardens and see everything around me that was actually lost to me at the time of the attack, as I came back into my body and senses instead of being frozen in trauma.

I’ve had multiple instances of abuse since childhood and quite often it’s led me to be unable to breathe, like I’m suffocating. I’m sure this is linked to the lung issues now. As I keep doing this work I’m hoping my body will increasingly move into the homeostasis a human body is supposed to have but is so disrupted by trauma.

So although it feels like my body in the last few years has totally cracked up and broken, I have some good ingredients to work towards healing. I want to keep believing I can survive and enjoy the things in life I want to.

All the best on your journey too 🙏

[Beeee]

Hello again Eagle Ray,

It's amazing to hear that the somatic therapy is helping. Healing is a long journey, but you're clearly well on your way. Facing your trauma head-on like that I can only imagine must have been scary and you should feel proud of what you were able to do. 

While your body has gone through a lot, it's still working hard to keep you alive! Your body did help you survive your trauma and I believe you can continue surviving, and hopefully soon, thriving.

Please keep us updated! Hoping your appointment on Wednesday goes well.

I'm always here to talk,

Beeee

[blues23]

Hi eagle ray

i too have health issues for a few years now I manage it ok first diagnosis for me was traumatic and plus I had a really bad specialist who basically said to me live on pain killers for the rest of your life ( this person was horrific for a medical professional no empathy whatsoever ) I got rid of her at the 2nd visit and changed to a holistic dr and I have been in remission for 3 years ( I still occasionally take medication when I have a flare up ( I am have reactive condition now due to stress in My life which is once again effecting my body and bones ) I also have another condition which is not so under control which of course is a little scary . How do I deal ? I walk a lot , I’m also alone but have a young child  to care for so I get the whole mortality thing . Life is a battle at times dealing with all the stuff thrown at us . I walk , I vent , i garden , i sometimes cry , I talk to my family , as they are very important to me so therefore they support me & I support them . 

[Eagle Ray]

Thank you Beee 🙏

What was amazing was it wasn’t as scary as it sounds to face the abuser, because I had a very strong sense of what I needed to do, but just needed someone to help guide me through it. For many who’ve experienced abuse they were alone at the time or others present either did not or could not help them. I think we can’t heal from trauma in isolation, and in the past I struggled way too much alone. 

I’m thinking of doing some boxing lessons as well. On the one hand I’m not sure if my body’s up to it, on the other I think it might be healing for my body that has been subjected to the suppression of anger my whole life and multiple experiences where I was unable to fight back. I think that part of me needs expression.

Thanks so much again for your support.

[Eagle Ray]

Thank you blues23,

It sounds like you did the right thing moving away from that specialist. I have a specialist who seems like he just wants to be retired and is dismissive of questions I ask. I’ve been trying to find someone else. But like you it’s holistic approaches that have given me by far the greatest benefit. I’m actually seeing an holistic practitioner tomorrow. He gives an hour and a half session, whereas the specialist sees me for about  10 minutes every 6 months. I do routine blood tests that go to him every two months and that’s it.

 I like to walk and garden too, though some days I can’t walk because of shortness of breath which makes me feel sad as I love to walk. I did manage a short walk today though. I think maybe I need to do more venting. I imagine that’s good stress release. Though I’m not sure who I could actually vent to in my life. I did do some screaming into a pillow last year but I live closer to neighbours now in a unit who might get freaked out if they heard me. I’m near the ocean. I could go for a swim and scream underwater! I did spontaneously start to cry when sitting on a rock in nature recently and so much grief came out.

Anyway, thank you and I’m sorry for the conditions you’re living with. Yes, stress can definitely make things worse. I hope you can find ways of keeping improving. It sounds like you are taking good care of yourself. All the best! 

[blues23]

 Hi Eagle Ray

Specialists are funny they charge a whole lot&$ and don’t listen a lot  or like to answer questions I had that with my other specialist) I have 2 one for bones one for my other condition) last time I saw my 2nd specialist he gave me not good news so I asked him straight  are u gonna do about it? And he didn’t like it one bit but I got answers probably not ones I want and not ones I want in a months time for a check up either but at least I know where I stand and can be assured I know what’s going on before the dreaded not knowing sets in and then bomb more stress .

venting can be good it’s hard to find people to vent to ( I’m lucky I can vent to my family and anyone else that will listen which is not many )I keep a lot of my problems bottled up and keep busy , distracted is the key not to think although it’s not working at the moment the busy thing , the walking thing helps intermittently but still the stress return, I’ve been told meditation is the key I tried it didn’t work . I’ve been told writing it down helps , sometimes it does sometimes it’s like a log of never ending stress  ,   Screaming can help I’ve done that a bit in nature also crying in nature it helps no shame in it my neighbours are not gonna worry if I scream it’s good therapy to scream u feel better. There is scream therapy, laughter therapy, have you tried any of those ?  Screaming under water is ok too .it’s good u can swim I cannot I never learned I was looking at the ocean today and the big waves on a deserted beach . I’m sorry about ur health too it’s hard not knowing, or knowing too much  , you know life is living now   What will be will be no one knows , there a lot happening in my health and lots I can loose too . It’s funny thou I’m more bogged down in other stuff than my health but the health is more important than the other stuff it’s strange it’s like maybe I’m in denial over my health strange . I think I pretend so much to be ok that I convince myself I am in the sense of my health , your story certainly gives me some perspective on what to worry over and what is not so important. Keep fighting Eagle Ray keep fighting. 

[Eagle Ray]

Thanks blues23. You keep fighting too! Your encouragement really helps.

I think distraction from health issues is quite a normal thing to do. It’s kind of normalising somehow to be caught up in other life issues. I think it mainly becomes an issue if those other things are creating stress that adversely affects health. But other times distraction can be helpful as it gives another focus.

My symptoms got progressively worse over the last 7 years so I was forced to look at my health. But I had huge amounts of stress in my life over that time and I know that was directly impacting my health.

You are right, that life is living now. Being in the moment is the best thing. It’s like putting down the past and future and just feeling, sensing and being present with everything this moment.

Take care and thank you 🙏

[jtjt_4862]

Heya Eagle Ray,

Thank you for sharing your story, and you have my sympathies for having to deal with a lot of challenging experiences even as we speak.

I feel sometimes, we get caught up worrying about our own mortality, that we're forgetting to live life. We'll always have that curiosity on what will happen and such, but living in the now is much more meaningful as it is a gift that we receive each day (that is why it's called Present, courtesy of Oogway from Kung Fu Panda!).

I find acceptance is also helpful; accepting our weaknesses, our mortality, and the inevitable. It helps ease the thought about our weaknesses and the end, so we can focus on the now and do what we feel is right for us in the moment. Take small steps into making a better version of ourselves each day, while accepting things that cannot be changed.

If you'd like to share more about your thoughts and stories, I'd be happy to listen. 

JT