What we’re about
THIS GROUP IS A SAFE SPACE FOR ANYONE WITH AN INVISIBLE or DEBILITATING PHYSICAL CHRONIC ILLNESS to know that you're not alone and your suffering and pain - no matter how "good you look" on the outside - is real and valid.
We believe you, because we, too, know what it's like to be deep in the trenches of battling chronic illness - whether it's fibromyalgia, CFS, lupus, MS, Parkinson's, EDS, Sjorgens, Lyme, COPD, ALS, Ankylosing Spondylitis, Long COVID, Chronic Migraines, Huntington's, Scleroderma, Epilepsy, Cystic Fibrosis, HIV, Cancer, Diabetes, and Hashimoto's thyroiditis - just to name a few. Our spouses, co-workers, family and/or friends may not fully understand us (or struggle to), but here we all do. We are chronic illness warriors who are stronger together!
RULES:
I repeat: this is a safe space. Leave any negativity, blame, anger or aggression, attitude and ego at the door. This is a humble place to unburden yourself and know that you are seen and your feelings are valid. We do not judge based on race, color, sexual orientation or identity, national origin, religious beliefs, age, or disability. Pain and suffering doesn't discriminate, nor do we. All are welcome here and tolerance is not only appreciated, it's required. Plus, being angry, hateful, spiteful, etc. is exhausting! And we don't have energy for that! We have to use what little energy we do have wisely!
ALSO...
This is not a community to complain, rant, or seek professional medical advice - we are not medical professionals and if you have any concerns you should speak to yours directly or call 911 if it's an emergency. We are a social group that focuses on positive, but yet practical encouragement.
ABOUT THE FOUNDER, NICK:
Thank you so much for joining me - and all of us - on this journey we all never signed up for. It means a lot. I'm not social worker; I'm just a "regular" guy who, instead of feeling isolated and alone, wants to meet other people like me, who may have a hard time finding and connecting with each other for whatever reason. I used to be an ultra-distance runner and triathlete and very social drinker in my previous life, but for over a decade now I've been suffering from severe Fibromyalgia, degenerative disc disease and a hearing impairment. While acceptance of this "new" life has been a long and tumultuous journey (including a lot of grieving my former life), I'm now in a place of mindful acceptance and am focused on finding happiness and meaning with what I have. I appreciate the need to slow down and focus on improving essential life habits such as nutrition, functional exercises, meditation, and mindfulness, which I'm starting to gain a deeper appreciation and acceptance of. One thing I've learned with living with (multiple) chronic illness(es) - and now being a father to twins (1.5 yrs old) - is a newfound appreciation of life, the resources I have around me, and the times I'm not in as much pain and spasticity. I like to spend what little energy I have focusing on things that bring me joy and spending time and energy with the amazing support system I have around me. And, of course, the deep, fulfilling connections I'm able to make with existing friends and now, new ones!
VIRTUAL MEETING GOALS
I'm hoping to host a virtual Zoom meeting every other week since it's easiest for everyone given all our health issues, logistics with work/life, etc. Stay tuned for event dates to be posted! Any questions - just message me!
IN-PERSON ACTIVITY GOALS
For what to do in-person, being mindful of how overwhelming pain and exhaustion can be, for those who live in the NYC Tri-state area, I'd love to try to meet once a season, if there's interest. We could just keep events to restaurants, happy hours, or if the weather's nice, we can meet up at a park and have a picnic or something chill and low energy. I'm a super laid back guy and completely open to whatever suggestions people want to do!
This is a social support group, meaning it's peer-to-peer, not led by a trained or facilitated by a psychologist. We want you to know you're not alone and there are awesome, accomplished, sincerely wonderful people that live in NYC who also battle chronic illness, like each and every one of us. It's easy to feel alone or isolated and this group is to dispel that. It's that simple. You are not alone. You're one of us and we're glad to have you!
Thank you for joining and I look forward to seeing you online and/or in-person soon!
Nick M.
