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Practical Insights for Busy Caregivers

Five things I wish I’d known before my chronic illness

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March 4, 2019, by CaregiverExchange.ca

“Finding out you have a chronic illness — one that will, by definition, never go away — changes things, both for you and those you love,” writes Tessa Miller in The New York Times. “No matter how much you try to explain, people expect you to get better already — and when you don’t, they resent you, consciously or not.”


Miller, a journalist who lives with Crohn’s disease, offers five key lessons she’s learned along the way that may prove helpful not only for other people with a chronic illness, but their friends and family as well.
 
For more information about health conditions from the patient perspective, check out our profile on HealthTalk.org. 
 
 
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  03/21/2019
Excellent piece. It’s been 20 years for me. I seek help anywhere I can, to this day. I no longer have doctor who understands or oversees -they drift away after a while. One did all he could, helped a lot, but he’s across the country, have to fly to him. Where I live now, the “GI” docs who are knowledgeable about the range of digestive disorders have gone “concierge” (even, or esp, at Mayo Clinic) which means they want cash up front, as do those with nutrition training -so all the insurance my husband worked so hard to have for us is useless for what I desperately need. The Gov’t insists I see a pain specialist and recommend a psychiatrist! We’re going backwards, not forwards. I’m losing weight at a frightening clip but have no medical guidance at all. What a system! As for social issues, the most difficult part is that I love to go out, but I can rarely eat, and it makes dinner companions uncomfortable to eat in front of me, so though I should go out socially, enjoy an evening, I rarely do. Your piece is a breath of fresh air. You’ve done a lot for yourself too. Surely there will be a breakthrough, a discovery, soon. I continue to experiment, hoping I’ll find the thing that works. Not to try isn’t an option. Like you, I research. That’s how I found the one doctor who helped me -but that was ten years ago. It’s about time for another break. Not holding my breath! Thanks for sharing. It helps.