just a question

[Staroftheday]

when I got diagnosed last June with ET and Jak2 they mentioned something abt a trauma now is this physical or mental trauma or was I imagining this , am still trying to get my head round this 😳

[Metronome]

I would assume such a diagnosis can be a traumatic experience for those susceptible. The degree anyone is affected can be influenced by many factors, genetics, age, stage of life.

From a personal experience, I was treated for anxiety at the same time I received my diagnosis. This helped for some time until my doctor got me off the treatment. I thought I had come in terms with my diagnosis (ET/JAK2+) but health anxiety came back in full force 2 years after diagnosis.

So it takes some a lot of work to cope with the idea of uncertainty, inherent in such a diagnosis. So for me it is definitely a trauma which needs to be dealt with.

[Staroftheday in reply to Metronome]

thanks need to make a doctor appointment I think I was ok at first but feel the uncertainty of the condition has got me am feeling anxious all the time xx

[hunter5582]

It is hard to say what kind of trauma they would have been referring to. It is quite common for people to experience a degree of trauma and anxiety when receiving a diagnosis like ET. Realizing that you have a "blood cancer" is rather unsettling. It take some time to understand the condition and how best to manage it. The good news is that you will have plenty of time to learn to manage the ET. You can plan to live a normal lifespan while managing the ET.

I was diagnosed with ET over 30 years ago. It progressed to PV about 9 years ago. I have lived a good life and at age 67 continue to do so. In the last several yours I have had some interesting and unique health learning opportunities, including finding out I had progressed into PV and was misdiagnosed, heart and brain surgeries, and other assorted adventures. It was rather stressful at times. Fortunately, I found ways to manage the stress and am doing well. I feel better now than I did 10 years ago.

We are all different in how we manage stress and a chronic condition like ET. One of the things that works for me in knowledge. Knowledge is power. Feeling empowered reduces stress levels. There are excellent resources to learn more, including the MPN Voice website mpnvoice.org.uk/, webinars, and patient forums youtube.com/channel/UC-S_Ic... .

Another great resource is the MPN Education Foundation. There are excellent webinars from the 2023 sessions. mpninfo.org/conferences/202... . The MPN molecular Biology presentation is a great place to begin.

Wishing you all the best as great success moving forward.

[FG251 in reply to hunter5582]

Aptitude plus attitude determines your altitude, and you’re flying high, my friend!

[Wyebird]

I was a mental wreck so I had a little counselling.

[Staroftheday in reply to Wyebird]

I think I need to look into this am just goin through the motions x

[Wyebird in reply to Staroftheday]

don’t beat yourself up. It took me years to realise I’ll never be able to do what I used to do. Take care

[Smoothie2020]

My emotions come in waves. When I feel I’m getting overwhelmed I have a conversation with myself and pray. I stay active and try not to stress because I don’t want to do anything to contribute to progression, and I try to remain hopeful that there will be a cure in this lifetime.

[Threelions]

Hi

I found that a course of counselling with Mc Millan about 3 years ago. Really helped. It was free & certainly gave me some coping mechanisms which I still use regularly.

Get in touch with them-they’re very helpful.

[MAP44]

Anxiety comes with disease as well as the diagnosis. Find treatments that involve your brain and moving your body, killing two birds with one stone.

Getting your mind wrapped around the fact that your body is betraying you is difficult especially when you have always tried to be healthy!! Now Re-wrap your mind into working with your body and finding simple solutions to feel better.

Mediterranean diet, long walk, pillow under your feet, dancing, Qi Gong, meditation, Breathwork, counseling, plan a trip, yoga in a chair, motivational podcasts, audiobooks, volunteering, gardening, photography, etc.

Try this…

youtu.be/FbWgGgRLp94(Not working as expected?)

Put yourself into situations that empower you and take care of your brain and your body together. You need to be #1 and honestly your dog, child or partner would have fun doing this FREE video with you. I stress free- you tube has so many free exercise classes and stretch’s. Find out what you enjoy and do it. ❤️❤️