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18 Things People With Chronic Illness Wish They Knew When They First Experienced Symptoms

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A journey with chronic illness typically begins when a person first starts experiencing symptoms, and it can be a confusing and uncertain time. There’s so much to learn not only about your health, but about working with doctors, managing friendships and finding the support you need.

We asked our Mighty community with chronic illness what they wish when they first started experiencing symptoms. If you aren’t feeling well, please consult a doctor; but we hope what you find below will help you as you start this process.

Here’s what they told us:

1. “It is OK to grieve who I was as I figure it who I now am.” — River Nuri

2. “Pushing myself was only going to make it worse… And it’s OK to let go of people who are causing more stress.” — Ally Putvin

3. “Save more money! It takes a toll on finances when you go down to one income if you are forced to quit a job due to [your condition].” — Marcy Wolfe Ringstaff

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4. “I wish I had known that although it seemed like the end of the world, it really wasn’t. I was strong enough to make it through the hard times with the help of my family and friends.” — Mary Bridget

5. “I wish I would have known I wouldn’t be able to do a lot of the things I enjoyed. So in hindsight, I would have rode every roller coaster humanly possible, swam in the ocean, and any other fun activity I always said I’d do and never did and don’t know if I’ll ever do again.” — Danielle Myers

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6. “I wish I had known that fatigue is not normal. I pushed through it until I collapsed and could barely get out of bed for a year because ‘everyone’s overworked and tired these days.’” — Tammy Byrnes

7. “Not every doctor will be an ally. I have to leave the doctors who aren’t a good fit and seek out the doctors who truly ‘get’ me and my medical situation.” — Lisa Sciandra

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8. “It’s OK to ask for a second opinion. I wish I had known it’s OK to do your own research and to stand up for yourself, even to medical staff.” — Tia Borkowski

9. “I wish I had known that there was something seriously wrong with my body and that trying to ignore the symptoms and act like everything is perfectly fine was not the way to get help from a doctor. Unfortunately, by then, it was too late. If something seems like it isn’t right, don’t be afraid to call the doctor.” — Meghan Bayer

10. “The ones who truly care about you are there when you need them, no matter how stubborn you get. You can lean on them for support.” — Melanie Louise Voll

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11. “I wish I had listened to my instinct that things were not right. I wish I had not trusted so wholly in the knowledge of my doctors, that I had known their knowledge is not all-encompassing. I wish I had known better how to self-advocate, and how to pursue answers for what I felt was going wrong. I suspected lupus many years before my symptoms became worrisome enough that I felt more driven to find answers. Looking back, I wish I had known I was right to be concerned about my mild symptoms. I wish I could have believed in myself sooner.” — Julie Pruitt

12. “It’s actually the best thing to put my own needs first. Even if I’m ashamed of them because they’re not the same as those of the people around me. Some of them can’t and some of them won’t understand anyway.” — Dymphna Bakker

13. “It’s OK to drop bad doctors and get the help you need. Doctors don’t know everything. Trusting in them 100 percent can be hazardous to your health.” — Kathy Lee

14. “I wish I knew that eventually this pain would make me a stronger, wiser person.” — Sara Cohen

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15. “Patience becomes everything. Patience with your doctor, patience with the emergency room staff, patience waiting for the right combination of meds, patience waiting on tests and the results of said tests, patience with those that don’t understand and most of all, patience with your own body. My mother always says to take a deep breath when in the hospital for checkups or longer stints, that there is a reason we are called ‘patients.’” — Suzi Higgins

16. “I wish I had known that it was possible to get sick and not get better. It would have saved me so much guilt and fear when people asked me why I wasn’t better yet.” — Brittany Postle

17. “I wish I had known how to find others like me right off the bat. I didn’t meet anyone else with my illness until I’d been diagnosed for three long, slightly depressing years.” — Laura Vago

18. “Although my life will never be quite the same, this doesn’t mean it can’t still be great.” — Holly Loughton

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If you have chronic illness, what do you wish you knew when you first began experiencing symptoms? Let us know in the comments.

Originally published: February 22, 2016
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