Category — Patient Advocacy

I’m happy to announce that the Cushing’s Partner Program is up and running on Meetup.com.

This group is for patients and survivors of Cushing’s syndrome and Cushing’s disease and is a place where patients can partner up with survivors of Cushing’s to gain an inside perspective on the recovery journey from Cushing’s. Patients who are in the early stages of diagnosis and recovery have the opportunity to partner with survivors who can share their personal insights about their recovery journey.

This group is completely virtual so people from all over the world can join without geographical restrictions. There are no physical meet ups or meetings. We meet and communicate through email and by phone.

Most importantly, we are here to support each other in a positive way and to share our personal experiences so that it may benefit others in their recovery journey.

Cushing’s is a debilitating and lonely disease. But you are not alone. There are others, just like you who are going through the same thing. Whether you’re current reader of this website or you’re new, I encourage you to please join this group by clicking on the Meetup badge located on the right side.

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The driving force behind my blog from day one has been to share my story in hopes that it might help others in their own journey of diagnosis and recovery from Cushing’s. When I was diagnosed with Cushing’s syndrome in Nov. 2007, I struggled to find information from the patient’s point of view. My doctor couldn’t tell me how I would feel after surgery, aside from what she learned from her previous patients. I wanted a first hand experience from someone who’d been through the same thing I was going through.

I did find some online resources where Cushing’s patients shared their stories and struggles with one another. But I found the environment to be more negative than positive. I was looking for support, not company for my misery. I wanted to talk to someone who was further along in their recovery and could tell me how long it took them before they could walk down stairs pain free. Someone to support me through my journey.

In A.A. recovering alcoholics work with a sponsor to help them on their journey to recovery. The sponsor is usually someone who has been in the program for awhile and has a better understanding of how to work the program to achieve sobriety. More important, a sponsor is one of the few people who truly understand what it’s like to be an alcoholic and how to begin the process of recovery.

I think this methodology could be applied to the journey of illness, like Cushing’s. What if there was a resource that could match you up with someone who has survived Cushing’s? Or who at least started the process of recovery? This person could offer you mental and spiritual support in your journey. You would be able to learn first hand from someone else’s experience. Distance wouldn’t matter because you could trade emails or phone calls.

Anyone have thoughts on this? Would you be interested in having a sponsor or sponsoring someone dealing with Cushing’s?

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In Part 1 of How to become your own patient advocate I talked about 3 different ways you can take control of your visit with your doctor. In this post I’m going to explore how find a doctor that best meets your needs. Most of us go to the list of doctors that are within our insurance network and randomly chose a doctor that sounds good. We make the appointment, show up and the deal is sealed. From this point forward, most of us will feel assured that this new doctor is all-knowing and will be able to fix any health problem for me.

Woah, woah - backup! I think it’s a common mistake that patients willingly put their health care in the hands of total strangers. Would you leave your child with someone you’ve just met? Or would you take some time to meet them first, get a little information on their background before trusting them to care for your child? I think most of us would (I hope).

We should think about our health care provider the same way. Just because he/she has an M.D doesn’t mean they know everything there is to know about medicine. I think it’s important to note that “studies of autopsies have shown that doctors seriously misdiagnose fatal illnesses about 20 percent of the time.” I understand that doctors are human and make mistakes and it’s for this reason patients should not rely solely on the word of their health care provider if they feel their health concerns are not being addressed.

Most of us like to think our health care provider has our best interest at heart, but that isn’t always the case. “Under the current medical system, doctors, nurses, lab technicians and hospital executives are not actually paid to come up with the right diagnosis. They are paid to perform tests and to do surgery and to dispense drugs.” I know this sounds awfully pessimistic but I think it’s something we should all consider.

I think one of the ways we can prevent our health care from getting lost in the system is have an informational interview with every new health care provider.

• What’s their background? Are you seeing this doctor for a particular specialty?
• What is their health care philosophy? Is it something you feel comfortable with?
• Do they listen to your concerns regarding your health?
• Do they listen to your questions and answer them to the best of their ability or put you in touch with a resource that can?
• Do they minimize your concerns or questions?
• Do they allow enough time in your appointment to discuss all of your questions & concerns?

I believe a doctor that will take the time to answers questions and address concerns will also take care of his or her patients for the long-term. No one knows your body better than you do. For example, if you bring up concerns about symptoms you’re having and you know that your body just doesn’t feel right, a doctor that has already demonstrated that he/she will take the time to address your concerns will mostly likely do what they can to find an answer for you.

But if this isn’t the case and your doctor brushes off your concerns, then it’s time to find yourself a new doctor. Don’t be afraid to seek out another doctor. Remember this is your health and you shouldn’t trust it to just anyone.

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When faced with a debilitating illness and symptoms a doctor can’t diagnose, you’re often left at a dead end road with no answers. But with so many resources available to us these days, the quest for answers doesn’t have to stop when a doctor says ‘you’re fine, there’s nothing wrong with you.’

How many of you comparison shop when you’re going to buy a big ticket item, like a new TV? This is usually an expensive purchase and you want to get the most for your money. Would you buy the first TV you saw? Or would you shop around, comparing prices and specs at various stores? I know I would. And that’s the mind set needed for getting the best health care possible. If you’re having symptoms that your doctor won’t address or says the test results show nothing is wrong, then shop around and get another opinion. No one doctor has all the answers.

This is when you make the conscious decision to change from passive patient to an active advocate for your own health care. And that’s OK. Don’t feel like you’re going to offend your doctor. Your health needs to be the number priority.

Prepare yourself and take control over your visits with your health care provider. You can do this in 3 ways.

1. Ask questions. If your doctor talks to you using medical jargon, tell them you don’t understand. Don’t nod your head in silence.

2. Be prepared. Come to your appointment with questions in mind or write them down. Try to stay focused on the bigger issues you’re experiencing. You have a limited amount of time during your appointment to discuss your symptoms or concerns and you don’t want to leave wishing you’d asked this question or that question.

3. Communicate your concerns or fears to your doctor. Their job is to help you achive a healthy well-being. And if they can’t do it themselves, then they should be able to refer you to someone who can. If your concerns revolve around insurance or inability to pay for your medical needs, don’t be afraid to bring it up with your doctor. They can often times refer you outside sources that can offer assistance.

In How to become your own patient advocate: Part II I’ll explore the different ways in which you can select a health provider that will meet your needs - so please stay tuned.

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