It was the perfect storm. I was young and single. The doctor’s office I was under the care of for my pregnancy sent me to a different doctor for each visit. And by the time I delivered my baby, I was so emotionally stressed from my personal circumstances, that caring for myself physically was way down the list. 24 hours after I gave birth I was in agonizing pain only to be told that it was “normal”. With no one in the medical field truly overseeing my medical care, this began a 3 month long medical nightmare. It was definitely one life lesson on the importance of learning how to be your own health advocate. So I have put together, from that experience and my heart health journey, 8 ways to courageously advocate for yourself when seeking a medical diagnosis.
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Now before we get to some great tips I have to share with you, I need to preface that I have the utmost respect for the medical community. My family is full of great nurses, on both sides, and even a doctor.
In this post I would like to offer you suggestions from a patient’s point of view on how to work with your doctor while still taking responsibility for your own health. And I want to share ways you can ask for what you need to feel respected as a patient and how to handle the emotional toll if it takes a long time to find a diagnosis.
Courageously Advocate for Yourself When Seeking a Diagnosis
February is Heart Health month. As some of you know, I was finally diagnosed with SCAD (Spontaneous Coronary Artery Dissection) in December of 2016.
It took 7 years, 3 heart attacks and multiple specialists to finally hear that diagnosis. It was an exhausting uphill journey. So when I am speaking about how to be your own health advocate I know a bit of the emotional work involved.
Be Your Own Advocate
So the first thing you will want to do when you courageously advocate for yourself when seeking a medical diagnosis is to assume responsibility for your health. You are a pivotal person in your health care team.
Often, we walk in the doctor’s office, tell our symptoms and then after we have shared we hardly question the advice we may be given. It should be a dialog. The doctor will share their thoughts and suggestions, but then we will want to ask questions or provide additional information. As the patient, we may agree with the doctor’s advice or we may need to clarify or share a concern.
So please, don’t step down from being an active member of your health care team. You are simply seeking the advice of a professional, and once you have carefully learned and asked questions you have some decisions to make.
Take a Friend or Family Member with You
When you have an issue that has been ongoing or are dealing with a serious medical issue, take someone with you to your doctor meetings.
This serves a couple purposes. One, you will have another set of listening ears. It can be hard to comprehend what your doctor is saying, all at once.
Having another person in the room with you, who is taking notes or just listening will increase your chances of clearly understanding what was said.
Two, if you give your friend or family member permission to speak, that will be another source of information for your doctor.
At one of my visits to Cleveland Clinic, my husband spoke up and told the doctor, “She is having a good day. This is a rare thing for her lately.” I had not realized that though I was explaining my symptoms to the specialist that I was unintentionally being more upbeat than normal. I was excited to be meeting with this long awaited specialist! I knew I would be completely drained later from the effort, but I couldn’t help my relief. But what I didn’t mean to do was misrepresent how I was truly feeling on a day to day basis. My husband stepped in and was a more accurate reflection of my day to day reality.
Be Aware of Other Symptoms
Our bodies are so amazing. But unfortunately when one part of our body is off balance it will start to affect other areas in the body. So while we don’t want to think that every symptom is connected, we do want to be aware of how our body is functioning overall.
If you want to know how to be your own health advocate, it starts with seeing your body as a whole!
One strange symptom that I kept trying to bring attention to cardiologists, was the fact that I was on my period when I had my first two heart attacks. Well, you can imagine how comfortable cardiologists are when a woman starts talking about her monthly cycle!! So most doctors would almost try to change the subject.
But it turns out, I was right! One of the major contributing factors for when SCAD will occur has to do with hormones.
So if you have a suspicion that some symptoms are connected keep track of them and bring them to your doctor’s attention.
You may also wish to seek out a doctor or those certified in natural health. Most doctors are only trained in pharmaceutical medication and therefore will only recommend prescription drugs.
Seek out the Best Specialists
Ask around for recommendations when seeking the best care or a second opinion. Nurses are a great resource when seeking a doctor recommendation.
If you feel like you are at a standstill in your care or have just been given a diagnosis, seek a second opinion.
Even though I appreciated the effort and attention my cardiologist had given my case, he did not have an answer for why I was having heart attacks. So I let my cardiologist know that I was going to seek out another opinion by going to Cleveland Clinic. My doctor got on board and even suggested seeking out some other specialists while I was there.
I was impressed by the patient care at Cleveland Clinic. A patient and doctor have time to talk. A doctor can also order multiple tests done in one day, streamlining the experience!
Keep Good Records
Both trips to Cleveland Clinic, I had to send all my records ahead of me. It was rather exhausting. At Mayo or Cleveland Clinic, the doctors read over your records before the visit so it is worth all the effort. However, even though doctors do their best to cover all your records keep track of any other duplicates you have.
I created a binder…I know I looked a little obsessive to some doctors, but most appreciated it. So when doctors had additional questions I often could turn right to the information. Keeping good medical records is important, especially when it comes to carrying any films or cd’s of procedures.
Also, it is a HUGE help to know your numbers. You should start to pay attention to your typical blood pressure readings and other numbers. Read over your blood work results and compare to older ones if you have them. Sometimes what is within “normal” range for others is not normal for you!
Prepare for the Marathon
When you are seeking a diagnosis it may take awhile. Don’t give up hope. Ask for help from friends and family members. There are many steps necessary to finding a clear medical diagnosis, so allowing others to know how they can contribute is vital.
Rest when you need it. When you are struggling physically, life is hard. Remember it is also taxing on your family as well. Everyone handles it a different way.
You and your family are both going through this experience together.
During the years after my heart attacks, I was often too tired to do more than keep up with the basics of life. The thought of trying to see a specialist felt overwhelming. When I had my first heart attack I was 35 and was raising a 4 year old, 12 year old and a 15 year old. My cardiologist told me that my heart attack was a fluke and to go about my life. So I did.
The second heart attack, I knew something was really off, and I started having week long periods of fatigue. But it was still hard to make the decision to seek additional help. It meant trying to find doctors, gathering medical records, find money to go out of town, take time off work and getting childcare.
My parents helped make the decision easier by offering hotel fee and childcare. So I made the effort to gather records and budget other travel expenses. And my husband took time off work and went with me.
Don’t Give Up
It would still be another 5 years before I had a diagnosis. Some of my symptoms weren’t manifesting yet, so this threw most of the doctors. And though my coronary artery dissection was clearly visible on some of my earlier tests, most doctors had never even seen one. So they weren’t even looking for it on my heart cath tests done right after my heart attacks.
As I mentioned, sometimes finding a clear diagnosis is a marathon. So try to live your life and rest in between gathering records and seeing doctors. Appreciate the good days you have.
Ask For What You Need
As a patient, it can be really heard to ask for what you need. Sometimes, the problem is we don’t want to bother people. Or we hate to cause more work for others. It can be hard to question “professionals” when they seem so sure they know what they are talking about. Or we may hesitate to speak up when our doctors come in rushed and late.
But when you go home, what will you have wished you spoke up and asked for that day?
You may also be wondering just what are your options as a patient. So I created a printable cheat sheet for you of 15 questions that I now know I can ask medical staff to create a better, more beneficial medical experience. (Psst…if you are already a TRC member then just use your password here:)
Courageously advocate for yourself when seeking a diagnosis. Remember that you are a vital part of your health care team so don’t be afraid to speak up about your concerns and thoughts. Most doctors appreciate patients who are informed and playing an active role in finding a solution. And if you run into a doctor that you don’t connect with, it’s ok to move on. And lastly, take care of yourself and appreciate the good days?
Have you struggled to find a diagnosis for yourself or a loved one? Share below so we can encourage you.