I’m generally not one to toot my own horn, but over the last several years, I’ve learned a thing or two about advocating for my daughter’s health as well as my own. It may have taken me years to have my daughter properly diagnosed with the connective tissue disorder that turned our lives upside down, but through trial and error, I have learned a great deal that may be helpful to others in similar situations.
Often times, when someone is chronically ill, we believe the health care system is just going to leap into action when we need help. Unfortunately, you’d be surprised at how often this just isn’t the case.
The truth is, while each healthcare provider may be very well trained to do what he or she does, it just isn’t realistic to expect them to remember or understand all aspects of our condition or treatment. After all, they are human, too. We need to learn to be our own advocates to make sure we get the care we need when we need it.
#1 – Build a Medical Team You Trust
Throughout the last several years, my daughter and I have built a list of more than 14 specialists (and growing) she needs to see on a regular basis – some more than others. And for one reason or another throughout that time, there has been a changing of the guards in some instances. It’s important to have a team of doctors that understands your condition and your views on treating it. If you aren’t seeing eye-to-eye with your doctor, don’t be afraid to lay it all out on the line. If, after a little heart-to-heart, it still doesn’t seem to be a fit, it may be time to move on.
In addition, it has helped us to have one family physician who serves as the Maestro to our orchestra of healthcare providers. He’s the one who receives record of every visit and results from every test. He’s the one that takes a look at the bigger picture and makes suggestions for next steps. He helps us keep our ducks in a row.
#2 – Organize Your Medical Information
No matter which physician’s office you find us in, you will always find us with our binder of information. This binder contains:
- A list of my daughter’s entire medical team and contact information
- Her short list of medications
- A complete list of all her appointments (past and future)
- A list of tests, dates of each and the results
- DVDs of MRIs, Echocardiograms, etc.
- Personal notes
If one of our physicians has questions about a particular test and who ordered it, we don’t have to stare at each other wild-eyed, throwing out 10 different names until we both agree on which it was (has happened). Having the necessary information in front of you can be critical to ensuring the best possible care and outcome for your condition. It can help your healthcare providers make informed decisions on everything from ordering further tests, prescribing new medication or deciding on surgery.
#3 – Educate Yourself
They say knowledge is power, and it’s true. If a person doesn’t fully understand his or her condition or how it can affect their life, fear can creep in and rear its ugly head. This can be very stressful, and stress can hinder the healing process.
Be your own advocate by gathering as much information as possible about your condition, whether researching over the Internet, joining a support group or asking questions of your physician and his staff. The fact is that, after months of conducting my own research on my daughter’s condition, I have been able to suggest certain tests for her with remarkable results. Now that’s not always the case, but if one of your suggestions doesn’t make sense for your situation, your physician will be able to explain the reasoning, teaching you more in the long run.
When you have a better understanding of your condition, you will feel more empowered to ask questions and take charge of your condition, rather than letting it take charge of you. This can have a powerful positive impact on your life and promote healing.
#4 – Ask Questions
If you don’t understand something, ask. I can’t tell you how many times I’ve sat, staring at a physician, wondering what language she was speaking. Ideally, physicians should always communicate at a level that matches a patient’s knowledge, but that’s not a realistic expectation. Physicians are under incredible pressure – time and otherwise – but if you ask questions, they will take the time to answer you. Make sure you prepare a list of questions ahead of time. This will make good use of the physician’s time and will ensure you get the help you need.
#5 – Communicate Your Goals
There have been times I’ve walked out of an appointment feeling totally defeated. I wasn’t prepared, didn’t communicate well, and therefore, we didn’t accomplish what I had set out to do. Don’t be afraid to tell your physician what you hope to get out of the appointment. In fact, make it known right off the bat. The more communication there is between you and your physician, the more comfortable you will become in advocating for the care that you or a loved one may need.
As you establish your team of trustworthy physicians, learn to communicate more effectively and actively take a role in your health, you’ll start to notice that you are no longer uncomfortable providing input or asking questions about your care. In addition, the more time you take to research and learn about your condition, the less fear and uncertainty you will experience moving forward. It’s important to remember that you are not only advocating for your health needs but for your peace of mind as well.
Stephanie @ Drive
Stephanie, a Drive team member in Creative Marketing, worked for years to have her young daughter properly diagnosed and continues to work diligently as her Caregiver to give her the best quality of life possible.