Polycythemia Vera: Vampires Would Love Her {Chronic Illness Podcast}

You Are Not Your Diagnosis

What is your disorder? *

polycythemia vera

At what age did your disorder become a daily issue? *

25

Who were you before your illness became debilitating? *

I was a graduate student pursuing a career in academia but I was completely miserable on my path.

What would you do if you were not dealing with your invisible illness? *

I don't know that I'd be doing much different other than maybe having a bit more energy in general

What would you like people to know about your daily life? *

That through alternative healing methods, I'm able to live a normal life- one that I didn't think was possible back when I was diagnosed in 2004 (which was actually a misdiagnosis)

What would make living and moving in the world easier for you? *

If doctors would understand the power of their words and their attitudes in how people get better or stay sick. If alternative healing was more embraced by people, especially doctors

Do you have any life hacks? *

Tons. One of my favorites is self-care, especially something called BodyTalk Access. Others include focusing on my mindset/thoughts

What kind of support do you get from family or friends? *

I've always had pretty good support. Initially, the challenge was my diagnosis became the topic of EVERY conversation and I felt that was who I had become. But now many people don't see me that way. Close family knows some of my challenges.

Have you ever had someone not believe you have an invisible illness because of your appearance? *

I've never had someone say that to me but I don't tend to want people to know my health history

How has your invisible illness affected your relationships? *

At times it put me in the position of feeling dependent on my parents for help, support, etc. Living with a husband who was diagnosed with RA and Sjogren's last year (which isn't something he's yet told many people about) can be challenging on days when I feel tired and he's hurting.

What is your best coping mechanism? *

taking time to center myself, breathe, ground, do self-care

What are you the most concerned about and the hopeful for in the future? *

Fearful would be that things could get worse. Hopeful that the tools that have already given me so much of my health back and completely eliminate the disease

What is your favorite swear word?

I didn't use to feel this way but now it is fuck

Any questions you think we should add to this list?

What is the hardest and/or best lesson your condition has taught you?

The best lesson is that being scared of the unknown and stuffing down my feelings, fears, etc didn't help anything but made things worse. I learned my body has a lot of wisdom that I can tap into

You Are Not Your Diagnosis

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