By Carl Cincinnato, Producer and Co-Host of the Migraine World SummitFighting for Your Own Health is the First Step in Creating Change
Why standing up for yourself, advocating and connecting with others like you can be a surprisingly effective path to a healthier and happier you.
Things are far from perfect… but since when did perfection ever become a realistic expectation?
There are a few obvious but rarely challenged features of how our current medical system works that should be acknowledged:
- Physicians get paid when you visit for a consultation, not necessarily when you get better.
- Physician performance, in terms of overall health of patients, is very rarely measured. Online review systems aren’t linked directly to patient outcomes.
- Insurance companies and the Affordable Care Act limit the amount of time and range of reimbursable treatments that physicians can offer each patient.
- This creates pressure on each consultation to be brief and efficient. Doctors are pressured to deliver a quick solution that neatly fits the problem—a square peg for a square hole.
This works fine for simple cases that the doctor can quickly diagnose and treat. But for complex or chronic conditions, illnesses, or disease, you can see how this model quickly breaks down.
We’re not square pegs. No matter how hard we or the physician try to push us through in the same manner, we’re not going to fit neatly into this model.
The next step requires an honest look in the mirror
The other barrier to overcome stems from us, the patients. We’re not perfect either, nor should we be.
With chronic health conditions, we’re often in pain, exhausted, and confused by the ailment as well as the treatment and its accompanying side effects. In this state, it is easy to feel vulnerable, desperate, and helpless. I know, because I was there for almost a decade. In this state, the temptation is to search for the miracle pill, or the secret answer that for some reason the previous dozen doctors held back from us.
We rely entirely on the doctor for the magic solution that doesn’t exist. We plead, they placate. It’s a common scenario, but one that leaves us much worse off than if we could effectively advocate for ourselves.
So how do we overcome these barriers and get the most from the health care system?
Let’s start with ourselves. Patients who self-advocate also tend to be better informed and more engaged patients. Informed and engaged patients get better health outcomes. Better health and significantly less disability is a strong motivation for anyone with chronic illness or disease to become their own advocate.
How do you advocate for yourself?
Self-advocacy, simply put, is standing up for yourself.
- It’s having realistic expectations.
- It’s understanding that while the medical system isn’t perfect, it’s all we have.
- It’s meeting your doctor on equal terms of mutual respect and understanding.
- It’s seeking empowering, practical knowledge over blame.
- It’s choosing hope over despair.
Never has medical science been so advanced, and access to information so freely available. Today, there are multiple sources of reliable and trustworthy information. There are authors, researchers, and foundations for almost every type of chronic illness and disease. Leverage and learn from them. You might be surprised what you’ll uncover.
Engage in your patient communities. You’ll find people who understand more than any family member possibly can. What’s more, someone else’s successes and failures can save you time and money.
It’s in our own best interests. Not only does it help you become more informed and confident, but your new connections are likely to help you find new breakthroughs, techniques, or approaches. You could be given opportunities to participate in studies or even be paid to participate in research.
Having a group of people who truly understand what you’re going through is incredibly important. It saves lives.
What you’ll also find is how much strength we have together. As an individual, it’s difficult to get attention from employers, lobby Congress or work with large advocacy organizations. If there are thousands of us, that’s a different story. Our strength increases exponentially as the numbers and voices rise.
If advocacy is the last thing you feel like doing…
I know what it’s like to feel completely crippled by chronic illness. It leads to isolation, anxiety, and depression that family and friends simply don’t understand. It drives a wedge between you and everyone else. It erodes the joy, fun, and meaning from life. It’s a slippery slope that can lead into a very dangerous place of despair and hopelessness.
You didn’t choose to have this illness but you can choose how to respond to it.
At the very least, being your own advocate means that you’ll gain a better understanding of what you’re going through and your confidence will grow. You’ll ask better questions and make better decisions with your health care professionals.
Seeking the truth and becoming empowered requires courage and strength. No one said it was easy. It’s something that only you can do for yourself—and there are no shortcuts.
What should you expect?
As you become more informed about your condition and engaged in your community, one of the first changes you’ll notice is that you ask better questions.
As your knowledge and confidence improve, your corresponding levels of anxiety or depression often fall. This itself improves well-being. You may even find that you make significant improvements or discoveries in your own chronic illness. I did.
After 25 years of migraine and seven years of chronic migraine, it was through the help of several anonymous people and resources that I was able achieve remission. It’s no cure, but I went from up to six attacks per week to around six per year.
With my renewed level of energy and enthusiasm, I decided to dedicate my efforts to helping others with migraine and headache. I joined a national non-profit and started the Migraine World Summit, an annual event that brings the world’s top experts together with patients—for free—one week in April. Today, the Migraine World Summit has become the largest migraine patient event in the world.
It’s been incredibly satisfying to see others finding quality information, connecting with others, and moving toward a better quality of life—just as I had been able to do.
It’s been a way to pay thanks forward.
Migraine is a genetic disease, one my future children have a much higher chance of having—and it can be a terribly debilitating condition. The more we can rally together toward a common cause and as a voice for advocacy, the better off our children and every future generation will be.
Our actions today are incredibly important. You can make a difference for yourself and many others.
You can learn more about Carl’s advocacy work at MigraineWorldSummit.com.