When you must cope with a medical problem or manage a chronic illness, you’ll find you have a variety of challenges and questions.
For clinical, medical questions, your most trusted resource should be your doctor.
But when it comes to everyday management of your illness or condition, then you may be able to learn much more from other patients with your same diagnosis.
The answers and resources provided by other patients or their caregivers can be invaluable. Have they ever experienced similar side effects to drugs? How do they cope with pain? Who is a good doctor for a second opinion? Have they found any effective complementary or alternative therapies? These aren’t medical questions – they are experience questions.
Where can you find patients with your same diagnosis? Support groups.
There are support and affinity groups for every diagnosis or set of symptoms you can imagine. From Alzheimer’s to hypertension, from Lyme Disease to depression – patients and caregivers are sharing information with other patients every day.
Some support groups are local. They may be sponsored by local hospitals, large physician practice groups or by associations that represent specific medical conditions or problems. Ask the nurse in your doctor’s office for information about these groups and find one that meets at a convenient time and place.
There are also thousands of Internet support groups. Many independent health and medical websites provide forums for individual diseases or conditions. Some of the same organizations that sponsor local support groups provide online versions, too. Link here to find listings and additional information about these groups.
If you decide to participate with an online support group, you’ll want to do so safely. Remember, that even if they claim to be, other participants are probably not medical professionals. Be sure to verify with your doctor any medical information provided.
Conversely, don’t try to give medical advice to others. You aren’t a medical professional either!
Finally, take steps to protect your privacy. Stay as anonymous as possible. Don’t provide information that could identify you. Use a first name only, and provide general geographical information if location is necessary at all. Don’t use your personal email address publicly because you’ll open yourself up to spam.
You’ll be pleased at the many ways other patients and caregivers can help you, and you’ll feel empowered by sharing your own experiences, too.
Seven years ago this week, I found a golf ball sized lump on my torso that changed the course of my life. After its removal, I was diagnosed with a rare, terminal form of lymphoma. Subsequently I determined I didn’t really have lymphoma. That was eventually confirmed medically, and I have never had treatment.
The fact that my tumor appeared in the month of July played a prominent role in my misdiagnosis.
Why July?
When we need medical care, we need to receive the best care possible. That best care requires a team of professionals playing different roles, depending on what ails us. From doctors and surgeons, to nurses, lab specialists and others, the team must conduct itself in a highly coordinated and collaborative manner to be sure we get the right answers and care. They dance a well-coordinated healthcare tango because each knows the right steps.
But sometimes there’s someone new on the team who doesn’t know how to tango. A new dancer can cause the entire team to stumble or fall. When that happens, we patients suffer.
July brings many new team members.
First, many of the “regular” professionals take vacations beginning with the July Fourth holiday, throughout the summer. That means new, sometimes temporary replacements must step in. They may only know how to waltz.
The second set of new members are recently graduated medical students. Having just completed their studies in May and June, they begin their residencies July 1. Not only don’t they know how to function within the team, but they have barely learned the two-step. A study reported in 2010 showed that counties with academic medical hospitals showed a 10 percent increase in medical mistakes in in July.
So how can we patients protect ourselves?
If possible, avoid medical care in July. In particular, any care that will require you to be hospitalized should be handled either before July 1, or postponed, if possible.
If you can’t avoid medical care in July, then be sure to verify every step with an advocate’s help. This includes double checking any lab work that yields unusual results, which – yes – was the root of my misdiagnosis.
No doubt those professionals who care for us in July have the very best intentions. But doing a tango with someone who only knows how to waltz results in toe-stepping and bad results. If possible, it’s a dance we patients should just sit out.
Before I began my patient empowerment work, I thought a specialist was someone who had learned all the general medical information, and then chose to concentrate on that one body system or disease that held the most interest for him. Turns out, that’s not exactly right.
In fact, medical students who choose any specialty except internal medicine get only two years of basic medical education before they jump into specialties. That’s not very much, really. So, while they develop extensive knowledge of one body system or disease, their broader knowledge of the body and its problems may be lacking.
Why is this important to us patients? Because sometimes our symptoms aren’t clear cut. If we visit the wrong specialist, he may not know enough about the basics to help us.
Example: A woman with an upset stomach is sent to a gastroenterologist. He runs tests, but they are inconclusive. He tells her there’s nothing wrong, that it will pass. But she gets sicker, and still the gastroenterologist can’t diagnose her. Why? Because she has ovarian cancer. She needs a gynecologist.
Another example: A man visits his primary care doctor complaining of achy knees and wrists. The primary, suspecting arthritis, sends him to a rheumatologist who prescribes a pain reliever plus an anti-inflammatory medication. Despite the treatment, the man’s symptoms get worse, and new ones appear – vision disturbances, heart palpitations. Still, the rheumatologist has trouble controlling the symptoms. Why? Because the man has advanced Lyme Disease. An infectious disease specialist might have diagnosed him correctly.
So what can we patients do differently to be sure we are getting the information we need?
Seeing the wrong specialist may mean we get the wrong treatment, or no treatment at all. Some doctors, lacking the necessary knowledge, will not diagnose medical problems like fibromyalgia or chronic fatigue syndrome, or even Lyme Disease, because they weren’t educated during a time those diagnoses were named. Patients may be prescribed drugs that mask symptoms, meaning that in addition to not getting better, it will be difficult for them to be diagnosed even if they do eventually see the right specialist.
If your symptoms aren’t clearing up as expected, or you feel as if your doctor is missing pieces of your diagnosis puzzle, ask your primary what other specialties might be considered. Because it’s true: what your doctor doesn’t know really can hurt you.
When it comes to TV and video, Al Roker provides one of my favorite quotations:
“They say the camera adds 10 pounds. OK. So I figure I must be standing in front of 10 cameras.”
Oh, yes, Al. I know how you feel….
However — I’ve decided to come out of my video-avoidance closet to share the following with you all.
First — my excitement at the invitation a week ago to appear on MSNBC to speak to a problem that I actually cited a few years ago – that July is the worst month of the year to be hospitalized. Why? Watch and see!
So that’s the first one. But if I’m going to jump in to the world of video, I might as well do it with both feet. Many of you know that I am brought in to speak at various conferences and meetings across the US and Canada. I enjoy speaking! So in my attempts to do even more of it, I’m told I need to have a professional video made. So, yes, I finally bit that bullet, too, and have uploaded the online version of the opening here.
It’s not like I’ve never done TV before – I have done local TV on a number of occasions. And broadcast isn’t the problem – ferheavensake, I have hosted a radio show for 4+ years! But video, in general, has just always been a step I’ve avoided.
(as published in the Syracuse Post Standard
