I have been there, the look of irritation and frustration from a general practitioner. They don’t want you making suggestions, or even to have a health or medical thought of your own. It’s not like you are the one with all the symptoms, or the one who feels ill! You aren’t the one who has been suffering for months or maybe even years with these undiagnosed symptoms.

Of course the doctors are supposed to be the ones with the degree and knowledge to always help the patient, and hear their problems.

The point of this is we are the people experiencing the disease, and we know ourselves best. Doctors are there to be sure we get a diagnosis, and get medication if we need it. And some of us need more help than others determining the real cause of our discomfort. But physicians do not have the right to treat us like we have no brain, and no idea what we are talking about. After all, they wouldn’t be in business if not for us.

How Can We Navigate Through This and Get The Help We Need?

1- Go to your appointment prepared.

I mean this in every way possible. Expect (especially if you are seeing a GP) to be treated like you are a crazy person. Expect them to doubt everything you share and to order a battery of tests that don’t apply to your symptoms at all.

I also mean be prepared with journals, notes and research to support your opinion of what is wrong with you. If you have had previous blood work, or medical records supporting your diagnosis, bring them.

2 – Be prepared to seek an additional opinion.

You may go in that day and all test come back “normal.” At that point, a GP might tell you there is no needed follow up and send you on your way. Some may have you follow up in six months. But six months is a long time if you are having trouble functioning day to day.

Don’t give up. You are not cray. If this happens to you it’s probably time to get another opinion. It’s time to find a doctor who will listen to you.

In my years of searching for a diagnosis, my first GP (now retired) listened to my concerns and read my notebook. I got a referral to a rheumatologist where I was diagnosed (still took 6 years to do that). Then after that GP retired I found another one (lucky) who was about mind and body, and knew all about SLE. He retired two years later, and I have yet to find another GP who doesn’t treat me like a crazy person (even though I had a diagnosis!). My biggest dread is when I am told by a specialist I need to consult with my GP. It’s such a pointless visit.

3- Look for alternative treatments to handle symptoms until you can get the medical help you need.

One thing I learned is there are times to medicate and times not to. When you are in the worst of it and can barely get out of bed, you need medication. Then as your flare subsides, it might be time to get off the medication. Most drugs for autoimmune disorders have very serious long-term side effects if used regularly.

What can you do?

See out resources or people who deal with alternative treatments, especially those who are open to combining traditional medicine with alternative. I did a lot of research and with a background in health, could navigate my way to find a batch of supplements to help maintain a healthy state outside of a flare. The alternatives do not stop a flare and if one occurs, I have to stop the supplements and get medication.

Some simple tips for those experiencing mild to moderate symptoms:

• Try some non or low impact workouts and exercise (such as pilates and yoga)
• Research supplements on wholehealthmd.com. Please do be careful and browse at your own risk. If you don’t know what to do, seek out a professional at a local health food store. Be sure they have a degree or certification to help you through this process.

4- Take someone with you to your appointment.

If you have a medical professional of any type in your family take them. Sometimes physicians are more comfortable speaking to another professional. I do wonder if the presence of my mother at my initial appointment helped. She has a degree in medical technology, and worked in the lab for years. She could confirm test results I’d brought with me in relation to my symptoms.

If you don’t have a professional, bring someone who can listen for you in case the physician provides additional information. An extra set of ears can help when emotions get to us.

5 – Keep a record of EVERYTHING.

Start a journal of symptoms and changes. Start by memory of your beginning of the disease. Date it and keep a severity scale. Move to the most current timeframe. Every entry should contain a date, list of symptoms, and the severity scale. Make a note of new or changing symptoms. Make a section for doctor appointment notes, and lab results. The new patient portals, mandated for this country, make it easy to access your records. If you don’t have access, your medical professional is legally obligated to provide it, so call them up and get access. Always accept access at any new appointment you have. You may end up with a 3 ring binder, or maybe a few pages, but every bit helps.

As always, seek a medical professional to be sure if any type of exercise or treatment is safe. This is not in place of medical advice, just some tips that have helped me in my journey.

Have you done these things? Have they helped you?