Many years ago, when I went to a doctor for chronic migraines, I brought with me a magazine article about a new treatment. The doctor, an older gentleman, told me that “a little knowledge is a dangerous thing.” He explained the years he spent in medical school and in private practice, letting me know that he was the expert, he would share with me all that I needed to know, there was no reason for me to go out and seek other, “less reliable” information. It worried me that a doctor felt an empowered, knowledgeable patient was a threat to his practice. I never allowed this doctor to share with me all he knew, instead, I changed doctors.
Self awareness about your medical condition or conditions, is essential to receiving the best possible treatment. While your doctor may be an expert on medical care, you are an expert on your body (Thank you, Teri Robert, for this quote). You know what you are capable of, what you want to do, what your weaknesses are. Luckily, the sentiment expressed by my doctor years ago is changing, even if slowly. A few weeks ago I attended the ePatient Conference in Philadelphia and was privileged to participate in a round-table discussion about creating a “Patient Bill of Rights.” Although this discussion is just a beginning, the principles included:
- Shared access to my data
- Attitude of collaboration and overall respect
- The patient is the largest stakeholder
- Transparency and authenticity across all areas
- Voice of the patient is a legitimate (clinical) source
- The right to efficient communication with providers who utilize the technology that we need
By the way, you can pledge your support for the core principles and ongoing support of the Patients Bill of Rights on Facebook.
The conference was geared toward the pharmaceutical industry, however, there were a number of doctors in attendance. Those who I spoke with were in full agreement of the need for collaboration between doctor and patient.
But collaboration begins with your own self-awareness. ADHD symptoms, like those of many illnesses and disorders, don’t necessarily look the same from person to person. You may have a hard time with impulsivity while someone else may have difficulty with inattention, even though both have been diagnosed with ADHD. Besides the symptoms, we all know that medication works differently in each person. Some prefer Adderall, others prefer Concerta, some prefer short-acting medications while others find these bothersome and prefer the extended-release versions.
With so many differences and so many variables, how can a doctor treat your ADHD without your input? The answer is, he can’t. Certainly, he can treat a generic version of ADHD but that often has nothing to do with how ADHD impacts your life. So how do you develop this self-awareness?
1. Learn about the symptoms of ADHD. Many of you have already done this, you have searched out books, articles, conferences and researched symptoms, causes and treatments. Others are fairly new to the world of ADHD and are still in the process of educating themselves.
2. It is important to know not only the main symptoms, inattention, hyperactivity, impulsiveness, but to understand how these symptoms impact your life. Are you forgetful? fidgety? chronically late? Think about how each of these symptoms interferes with your abilities.
3. Understand not only the negative but the positive aspects of ADHD. You might be artistic, an out-of-the-box problem solver, a risk taker. To be an integral part of your treatment, you must understand both your weaknesses and your strengths.
4. Keep a log for each treatment or medication you try. Know exactly how the treatment is working. Are your symptoms (the negative ones) improving? By how much? Is this acceptable? Keep track on a daily basis.
5. Know what situations, events or even foods cause a change in symptoms. You might be even more inattentive during times of stress, for women, symptoms may vary based on hormonal cycles, caffeine may help settle you down, high-stimulus areas may make you more hyperactive or impulsive. Include this type of information in your daily log.
6. Keep track of behavioral strategies you use so you know what works for you and what doesn’t. Does a “to-do” list help keep you focused or do you simply ignore the list? Does plugging events into the calendar on your phone remind you of where you need to be? By learning what works and what doesn’t, you don’t waste time on useless strategies.
This type of log is essential to finding out about yourself and how your ADHD interferes or complements your life. You can now be more specific about what areas you need to work to improve.
Finally, to be an effective partner in your medical care, you need to know what it is you want from your doctor. Have you learned how to manage your symptoms and your doctor is simply someone you need to fill prescriptions? Even so, you should be able to tell him whether the medication is working (see #4). Do you want help from your doctor/therapist on coming up with some behavioral strategies? We can’t possibly know if we are satisfied with our medical care unless we know whether it meets our needs - and unfortunately most of us haven’t sat down and figured out exactly what our needs are. Once you have, talk with your doctor, let him know what you need, want and expect from your office visits.
Be aware, be involved and take control of your ADHD.