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Real members of myMPNteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Is It Normal To Feel Isolated?

A myMPNteam Member asked a question 💭

I have been recently diagnosed with ET.I believe it’s too early for me to realize what impact it may have on my life.Its just that I had plans about my future but now I have doubts.As nobody around me is aware of this illness so I don’t share about this with anybody, even if I feel like.Having doubts now sometimes if I can keep on working towards the future I had thought about.

August 30, 2024
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Answer Summary

Members responded with deep empathy to someone newly diagnosed with ET who felt isolated and uncertain about their future, emphasizing that... Read more

Members responded with deep empathy to someone newly diagnosed with ET who felt isolated and uncertain about their future, emphasizing that feelings of isolation are completely normal and that many people with MPNs continue to work, travel, and live fulfilling lives for decades. Several members shared practical wisdom about selectively sharing the diagnosis with trusted people who can provide support, learning to recognize individual symptoms and triggers, advocating for yourself with medical teams using research studies, and understanding that this illness affects everyone differently so comparing yourself to others can create unhelpful pressure. A recurring theme was the importance of taking life one day at a time without letting worry steal today, grieving the loss of the future you imagined while building a new one adapted to your body's needs, and finding connection with compassionate people who truly understand the invisible challenges of living with an MPN.

A myMPNteam Member

I have been living with an MPN 23+ years, and many of us continue to work, travel and live our lives while managing our illness.

Deep breaths, one foot ahead of the other, and all the best to you,

August 31, 2024
A myMPNteam Member

Ashish,
I am in a similar situation having been diagnosed ~8 weeks ago. Unsure of what symptoms are due to ET and what is not. Time moves on and things have settled down a little for me. I hope they will for you as well. I still don't know about the future but am trying to do my best to live in the present. You are not alone.
Peace be with you

September 4, 2024
A myMPNteam Member

Hello Tatiana,

Thanks for sharing the links.Though I never looked into medical journals earlier,I feel it would be helpful to be knowledgeable of the symptoms.But also to be mindful of the individual symptoms which might not be specified in the research papers.

Thanks
Ashish

September 3, 2024
A myMPNteam Member

I have learned to take each day as it comes and be grateful. I do what I can to be healthy and follow my doctors suggestions and then I live my life. No one knows about tomorrow - even the healthiest person - so I try not to waste today with worry.

August 31, 2024
A myMPNteam Member

Dear Ashish,

Regarding inflammation and symptoms in MPNs, this study is a good read:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC46...

Regarding risk of infections in MPNs, I use this study as reference:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC77...

And if fatigue is part of your daily experience, this study is good for catharsis if you have to keep fatigue for yourself, when those around are not easy to talk to:
https://onlinelibrary.wiley.com/doi/10.1002/cnr...

I am using these studies also when I need to advocate for myself in health care.

Take care,
Tatiana

Impact of Inflammation on Myeloproliferative Neoplasm Symptom Development
Impact of Inflammation on Myeloproliferative Neoplasm Symptom Development
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4619953/
Risk of infections in patients with myeloproliferative neoplasms – a population-based cohort study of 8 363 patients
Risk of infections in patients with myeloproliferative neoplasms – a population-based cohort study of 8 363 patients
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7738400/
https://onlinelibrary.wiley.com/doi/10.1002/cnr2.1655
https://onlinelibrary.wiley.com/doi/10.1002/cnr2.1655
September 2, 2024

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