A few months ago, we asked our social media followers to share your best tips for getting started with chronic illness, using the hashtag #chronicillness101. We published many of the responses in the fall issue of Community—out now!
But there we so many great answers, we are also running some (edited for brevity or clarity) here.
We asked: What’s something that you took for granted before you were diagnosed? Offer your advice to the newly diagnosed.
I took for granted being able to do things without thinking about pacing and energy banks. My advice: Learn all you can about pacing for fatigue and managing energy. Plan ahead and have breaks. Take time to recharge. Talk to people about your difficulties and don’t try to do it on your own. Join a support group. Get support from therapists such as physiotherapists and an occupational therapist to help you manage your new life and limitations so that you can still do things. Find positives in everything and practice thankfulness. — Julianne Ryan
That I’d live as long as my dad, who died at 97 after elective surgery! Hopefully, I’ll make it to my mom’s age of 90 when she died. Advice? Take your meds as directed, stay positive and exercise! You can still exercise when you feel crappy. Keep pushing yourself. — Jacqui Kanat
Going to high elevation. — Tamara Sodre Sedra Wilson
Breathing, energy, being able to do things without planning. Advice: It takes time, but you could feel better than you have ever felt. After being on meds for a year I was able to nearly climb all the way up to the water slide before stopping for a break! — Kris Baker
Tony Ward: Walking up stairs!!
Melissa Haynes: Agreed and I live on the second floor.
I have always been self-sufficient. I miss that. — Linda Bass
Being able to do spontaneous things and not worry about fatigue halfway through. Only being able to do one thing in a day that takes energy. Going grocery shopping but not having enough energy to put them away. — Sharon Kent
Walking without thinking where each foot will step. Balance is shot. Running and jumping are memories. — Joseph Walker
Breathing easily. — Kathi Gleason Schoenrock
Walking fast and breathing at night without oxygen. — Jo Ann Whitfield
Going for a walk. — Carol Anne Hughes
Working, bringing home a paycheck, providing for my family, putting food on the table, and not having to stress about it. Now I stress out over everything: Am I going to be able to get my medicines this month? Am I going to be able to pay the utilities, the mortgage? What if the car goes into the shop again? What if one of the children gets hurt again?
We do not qualify for the state food programs because I make too much on disability. We don’t qualify for Medicaid. So I would have to say what I took for granted before I was diagnosed, Christmas of 2015, is the ability to work, to perform my fatherly duties, to support my children and be a husband for my wife. — Gary Haskell
We also asked: Do you have advice for someone just diagnosed with a chronic illness?
If you are diagnosed with a chronic illness it can be very frightening. When it happened to me I was devastated and scared. Fortunately, I had wonderful physicians who helped me understand what I was facing. PH is a rare disease with no cure, but there are medications that help treat it. I have fought the good fight and, though it has not been easy, it has been 12 years since my diagnosis. I look forward to the years ahead. So fight with everything you have and trust your physicians. — Helen King
Your condition is a part of who you are. It doesn’t make you weird. We are all ourselves. I was diagnosed with epilepsy 25 years ago. I tried over 12 drugs and decided to have brain surgery. I had a few series a week and didn’t learn how to drive till I was 26. I don’t let being different from my friends stop me from skiing, skydiving, paragliding, bike rides or traveling. Taking meds is part of life, like brushing your teeth. The new condition you are diagnosed with is part of the unique one you are. — Razzle Dazzle
Chronic doesn’t mean terminal. Be grateful you are treatable. Live, love, laugh! — Gayle Kohler Gambs