By Barby Ingle, Columnist
When there is a hallway full of doors and you don’t know which one contains the cure, where do you start? Which door do you choose?
I go with the green one. The one that makes the most sense to me personally. The door is a place to start finding answers and access to care. If what we need is not behind that door, remember there are other doors down each corridor of life.
Patients all over America have been struggling to get good healthcare for chronic conditions since I can remember. These patients, along with their loved ones, healthcare providers, and millions of taxpayers, are suffering the pitfalls of a healthcare system that too often doesn’t work.
In most chronic care situations, we are not taught self-advocacy skills. As a result, we often don’t know our rights or responsibilities as patients.
For this terrible situation to stop, it is going to take a combined effort on the part of many people. But it starts with us becoming better informed, proactive, and organized as patients.
Better organization, prevention programs, access to care, and learning the tools to take care of ourselves between appointments will go a long way towards ending this crisis in our society.
I talk a lot about being prepared and organized as a patient to receive the best healthcare possible (see “What to do Before Seeing a Doctor”). Starting a journal and keeping a checklist of things to talk about with your doctor will help guide you through the minefield of the healthcare system. It takes work in the beginning, but gets easier as you go. You’ll save yourself more pain and challenges in the future.
Finding the Right Fit
When it comes to living the best life you can, every person has choices. There are even more choices for those who have chronic pain or illness. It is important to find the right fit for you. Patients can either let the disease run them or sort through the system and take control of their disease.
Your first goal should be getting a correct diagnosis. If you need to go to multiple doctors, take the time to do it now to prevent your health from deteriorating further.
Each doctor has their specialty and treatment options that they are comfortable with. This does not always mean that they are the right doctor for you or that another treatment will not work. If you are not comfortable with the treatment offered by your current provider, find a doctor who you trust to try different options.
It can be very aggravating to deal with a kidney stone or torn ligament, but at least there is an end in sight. You can get back to a “normal life” once the stone passes or the bone break heals. Other conditions such as high blood pressure, heart failure, diabetes, Lyme disease, multiple sclerosis, RSD, arthritis, osteoporosis, neuropathy and other chronic conditions can be more of a challenge for patients and usually last a lifetime.
Coping with a chronic condition takes hope and self-awareness. Take charge of your disease instead of letting it rule you. Some doctors, friends, and even family will say, “Just live with it” or “Get used to it.” But you are the one who lives with a chronic condition. You can learn to live with it and how to manage life around the symptoms and problems without losing yourself.
Being positive and hopeful in what you can make of your future is a big factor in determining whether you have a successful outcome. We need positive attitudes to make lifestyle changes. Some will be easier, such as changing your diet or beginning a physical therapy routine. Others will be more difficult, like having to sever ties with a family member or friend who is hindering your recovery. We also need the support from our healthcare providers.
Most of all, we need to recognize that we are responsible for ourselves and that a successful treatment may require changes that only we can provide to ourselves.
We all deserve to have our pain taken seriously. To have the pain managed well instead of under-treated, untreated, or over-treated is important. Pain must be managed effectively and in a timely manner, with the underlying condition being addressed while the pain is being managed.
Do not assume that your doctor knows how to treat your pain. Every patient is different and doctors only know what they have been exposed to in their practices, schooling and continuing education classes. We must keep going until we find the door that is right for us.
Don’t forget your lifelines. There are prescription programs to help cover co-pays, ways to appeal insurance decisions, and ways to negotiate with your providers to get the care needed. The goal is to receive effective relief and be able to organize and manage all aspects of life.
Finding good healthcare and support systems will lower the number of hospital visits, time spent in the hospital, unnecessary trips to the emergency room, repeated tests, and inadequate treatments. All of which contribute to the high costs of healthcare. On average, living with chronic pain costs $32,000 per patient per year.
Staying organized, keeping good records, and communicating with your pain care team will help you get access to proper and timely care.
Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.
More information about Barby can be found at her website.
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.