How To Get Help When You Have A Condition No One Understands

I’m a student in the middle of completing my thesis and studies abroad, with an immense drive for what I desire. I became this way because there have been countless times I’ve been told that my gut wasn't right, or that what I wanted wasn’t an option.

I have always struggled with illness — even since I was in a cradle. When I was young my disease manifested vaguely, so doctors helped my symptoms but not me as a whole. I was treated for a range of symptoms, from migraines to yeast infections.

Flash forward a few years: my weight dropped by 10 pounds to 105 pounds in a month, I couldn’t eat due to nausea, I spun into a violent depression, my skin changed pigmentation, abdominal pain landed me in the ER, my vision became blurry and my energy was never lower. I was relentless with going to doctors and getting explanations — getting help. I was so confused and helpless; none of this was like me.

Despite my effort over many years, three doctors referred me to a psychiatrist for hypochondria. Again, my gut told me they were wrong, but the mere suggestion tormented me.

I waited it out, until my symptoms recently reached an all-time high. I developed pain so severe that for a month I couldn’t cook, walk my dog or even lift a glass of water. Even with this severity, doctors told me the causeless symptoms would subside. They only got worse.

Flash forward two months with no relief (and a relentless search for the right doctor), and I've been diagnosed with lupus.

Now, after 20 years of symptoms and suffering, I have a diagnosis. And although it was the hardest time of my life, I came out of this with gems of knowledge that can help those trying to wade through the murky waters of the medical industry.

1. Do your research.

Is your doctor in your network? Do they have reviews? Is the receptionist kind and helpful? Will they schedule an appointment in a reasonable time period?

2. Let your provider help you.

Ask insurance about coverage and about what kinds of doctors are what. They can be a great resource for your health and recovery.

3. Get the right kind of doctor.

Each kind helps in different ways. Having the right doctor will change how your symptoms are analyzed and treated. Typically, in order to go to a specialized doctor, you would get a referral from your primary care physician.

4. Expect good “bedside manner.”

Bedside manner is the way a doctor interacts with you. Do they sit down? Do they make good eye contact? Are they hearing you or are they dismissive? Are they concerned for you? Are they asking questions? Did they review medical history? Did they explain things to you? You should feel secure that your doctor is doing all they can to better your well-being.

5. Be relentless.

Remember when enter the office, all the doctor knows about you is your patient history. They don’t know that you’re active and have kids that need you or that you work diligently and travel often. They don’t know that it’s not like you to become crippled by pain or complain. Allow your doctor to know the ways your life changed, and the way that you normally function. Bring photos, records, symptom lists and timelines.

6. Keep a good attitude.

The right doctor will treat you with respect and appreciate your upbeat attitude. No need to get upset or have a fit; if the doctor is not satisfactory, thank them for their time and go on with your search. Your diligence and attitude will get you to where you need to be.

7. Supplement your health care.

On top of necessary treatment from doctors, do what you can to create a healthy lifestyle. With the guidance and permission of your doctor, consider a well-rounded approach to health. Well-being comes from all angles, not just one form of healing alone.

8. Most of all, trust your gut.

This cannot be stressed enough: if you feel that something is wrong with your body and your body is showing you signs that it is, then it is time to take action. Call it intuition, divine guidance, or a sign from the heavens, but what you’re feeling is valid and only you can advocate for yourself.

Get the process moving; it may take a couple tries but you deserve it and you will get the answers you need if you know how to ask.

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