What Doctors Don't Tell You When You Become Chronically Ill


I have a variety of illnesses, and because of that I have both a variety of doctors and a variety of medications. Over the years I have learned a lot, and as such there are some things I wish my doctors would of told me and some things that I wish I knew myself when I was just first starting out.

Doctors will not tell you that sometimes you should keep your medical file on hand, because if you are like me and can’t seem to stop “catching them all,” you maybe bouncing from doctor to doctor. If you don’t have your medical records, your care maybe fractured more than necessary. You may have medications that interact and your doctors may not know, or that you are allergic to Penicillin. It’s worse if your doctors aren’t in the same medical group. They may not tell you that there is a lot of paperwork involved with just trying to send medical files from one office to the next. I’ve had the misfortune of having a doctor try to request for my medical file from a different medical group, and they got a fax back – but it was just a copy of the request they just sent them.

Doctors do not tell you that being chronically ill is like having a job and going to college to get a degree – on top of all of your responsibilities. I’ve learned to multi-task, like being on the phone while researching medical terms. Most people do not know the difference between an Health Maintenance Organization (HMO) and a Preferred Provider Organization (PPO), so if you don’t know all of these insurance terms, I suggest you might research them. You may save a trip to the doctor’s office off the bat.

Doctors will not tell you that everyone will think they know what will “cure” you. Yeah, I’ve gotten so many ridiculous responses to my list of ailments after they asked me, “What is wrong with you? You are too young to ___.” I’ve got told things from, “Turmeric can treat your autoimmune disease,” to meditating my depression away, to yoga somehow taking the pain of my immune system attacking my joints away.

But most of all, doctors will not tell you that you have one of the strongest and most welcoming communities of all. They will not tell you that there are Facebook groups for almost every diagnosis under the sun. They will not tell you that there are meet-up groups for a lot of illnesses, so you can meet humans in real life with the same or similar diagnosis. Nor do doctors will they tell you that you aren’t alone. They will not tell you that you deserve love like everyone else, or worthy of happiness and health.

If there’s one piece of advice I would give to a younger self, it would be to go out there and make some friends with the same or similar diagnosis, and check in with them. Keep up to date with them from current events to the cutting edge of research. The future is now!

So go ahead and love freely and live fully – you deserve it!

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: NanoStockk

TOPICS
JOIN THE CONVERSATION

Related to Lupus

watercolor painting of a woman wearing a crown surrounded by flowers

The Perks of Having Lupus

OK, so it’s not great having an incurable, life-threatening, life-changing disease that can control your life and ambitions, affect your relationships and make day-to-day life a struggle. It actually sucks. It’s even worse when you feel like people don’t understand, which is a top complaint from anyone living with a chronic illness. It can affect your mental [...]
Woman against wall, in deep thought.

To the Girl I Once Knew, Before Chronic Illness

To the girl I once knew, You were vibrant, full of life, daring, adventurous, spontaneous. You could explore nature’s beauty with ease. You could devour anything you set your eyes on. You always surprised yourself with the amount of strength you built through all those endless hours spent in the gym. You used to enjoy [...]
Painting of a double exposure with a woman and a floral layer.

Why I Started to Live Outside Life's 'Safe Zone' Because of Lupus

Before I was diagnosed with lupus I always played life in the safe zone. It didn’t really change much after I was diagnosed – until I had a flare that I thought was going to be the end of me. I swore to myself that if I recovered I was going to make the most [...]
woman and her dog sitting on a pier watching the sunrise

How My Support Dog Helps Me Through Life With Chronic Pain

About two and a half years ago, my husband and I went to the local shelter “just to see” the dogs. (I really should know better. I’m the type of person who would take all of the dogs home if I could.) During this time, I had really been struggling with health issues. My depression had hit [...]