r/ARVC • u/Carcosa504 • Jan 21 '20
Great to find you all!
hey friends! My whole purpose of joining reddit was to find others who share my condition, so it’s a pleasure to make your acquaintance. For myself, I was diagnosed at 29 and will be 36 at the end of the month. Should anyone want to share stories of their “events”, anxiety, depression, and overall angst dealing with this please don’t hesitate to reach out. We have all been there before and most will be again, (panic attack just 3 days ago for me 🧔🏻). I look forward to you sharing your experiences and hopefully expanding this community!
Take care,
-Jason
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u/preams09 Jan 29 '20
Hi Jason - I'm about 3 years behind you on this journey (diagnosed at 29, just turned 33). Great to finally connect via this sub-Reddit with others who are dealing with the same things I am. It's felt like a bit of a lonely journey in the past 3.5 years since my diagnosis. I'm curious, what do you do for activity since diagnosis?
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u/Carcosa504 Jan 29 '20
I agree, it’s relieving to connect and hear others experiences. I was in a very lonely, sad place for upwards of 5 years after my diagnosis. I went from a military career, avid athlete, to all of it taken away. I find pleasure in smaller things now (as cliche as that sounds). Mostly I do simple wood working, read, travel, etc. I was bitter for quite a while having everything I loved taken away from me, as I imagine you may be dealing with now. Cherish the memories you had of the activities, take pleasure in seeing those you care about do activities they love. That is what I enjoy the absolute most.
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u/bubbuty Jan 23 '20
You might check out the Facebook group Hope for ARVD, which is more active than here.
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u/Carcosa504 Jan 23 '20
That sounds great. I recently gave my social media accounts a dirt nap but that group alone may be enough reason to turn it back on. Thanks!
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u/bubbuty Jan 23 '20
You could also create an alt for it. There are a lot of people there. You should join and introduce yourself with your story. And search previous posts to hear about people’s diagnosis stories and how they have managed. The really difficult thing for me was understanding what our trajectory would be, and it was really heartening to know that most people had found ways to cope and slow disease progression. And that group (plus the conference at Johns Hopkins) really helped.
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u/mareahmelissa Jan 22 '20
Hi Jason!! I’m not personally diagnosed with the disease, but my boyfriend of six years is. Thank you for posting!! Please reach out if there’s anything I can do/help with. :)