I’ve always tried to be my own best advocate, but for a long time, I needed other people to help me fight for my health.
Meniere’s disease is a terrifying and complicated diagnosis. There were multiple times when I couldn’t see the light at the end of the tunnel and had to rely on those closest to me to survive.
I know how lucky I was in those early days to be surrounded by people who cared enough to help me when I couldn’t help myself.
I learned a lot from these experiences. It’s hard to let people help – to be so vulnerable. It’s hard to accept that you need help, that you can’t do it alone.
It’s still hard for me to even think back on the times that I couldn’t take care of myself.
But now I’m sitting on the other side of the table, helping someone else fight for their health – someone I love – who was there for me in my time of need. And it’s given me an entirely new perspective on patient advocacy and being a caregiver.
So today, I want to talk about what it’s been like to support my wife Megan through her cancer treatment and share a few ideas on how to be a better patient advocate for someone you care about who is struggling with a difficult diagnosis.
(If you are the one who is struggling with chronic or difficult illness, share this with your friends and family!)
What does it mean to be a patient advocate?
An advocate is someone who helps a patient fight for their health.
It can mean a lot of things: being a supporter, believer, voice, caregiver, organizer, helper, educator, and more. It’s about helping a patient find the right medical treatment, make informed decisions, and better care for themselves.
Chronic illness can make it difficult for patients to coordinate their own medical care. In a perfect world, patients wouldn’t need to play an administrative role of any kind when seeking treatment for their illness. But it doesn’t always work out that way, especially when it’s a complicated diagnosis or when multiple doctors across multiple specialties are required.
Sometimes, patient advocates are professional helpers who are educated, trained, and paid to support patients. But more often than not, it’s the friends and family members who take up the mantle of advocacy.
You don’t have to be a professional to help a loved one navigate the complicated waters of chronic illness (or any difficult medical diagnosis for that matter). With the right approach, you can be a better advocate, support person, and caregiver.
How to be a better patient advocate:
Step 1 – Understand Everything:
If you want to be the best possible patient advocate for your loved one, you first need to make sure you actually understand their situation. In my opinion, this is the most important step.
For starters, your loved one may be too sick or overwhelmed to understand everything themselves. But even if they’re not, if you don’t also understand everything about their situation, you won’t be able to help them make the right decisions that lead to the best possible outcome.
Follow these 3 basic rules:
- Research the diagnosis until you have a basic understanding of their condition.
- Take notes at every doctor’s appointment and make sure you understand what the doctor is telling your loved one at all times.
- If you don’t understand something, ask questions until you do.
Megan’s breast cancer diagnosis was far more complex and scary than what many early stage breast cancer patients typically have to deal with, because she was 6 months pregnant with our first child when we got the news.
There was so much to understand and so many possible outcomes at every step of the process. The decision tree was so long that it was impossible to see the bottom from the top.
I knew from the start that it was going to be difficult for Megan to deal with everything that was happening. A cancer diagnosis is hard enough when you’re not pregnant.
So I made sure to always understand everything we were told at each step of the process. I took comprehensive notes at every one of her doctor’s appointments, asked questions until I was completely clear on the details, and I researched everything online as well.
It takes a lot of work to support someone on this level. And for reasons I’ll never quite understand, some doctors get frustrated when you ask a lot of questions. But it’s worth it, and in our case, it led to the best possible treatment available to us, and the healthy birth of our first son, Zack.
Step 2 – Second and third opinions matter:
When you’re dealing with a complicated diagnosis, bad news isn’t always delivered in a helpful way and it’s often easy for patients to just accept the worst-case scenario. It was for me.
When I was diagnosed with Meniere’s disease, I became deeply depressed. My first doctor was absolutely terrible. He yelled at me when I asked questions, told me I would need to change everything about my life but didn’t explain why, and had me convinced I was going deaf.
I thought my life was over when I left his office. My symptoms were so bad that I could barely function. And my problems were suddenly very real and very permanent.
Nothing changed until my family convinced me to get a second opinion. My second doctor was incredibly kind and compassionate and filled me with hope. I didn’t even know that hope was a possibility.
Similarly, in my work with tinnitus sufferers, I can’t tell you how many people are told that there is nothing they can do, that they just have to live with it. It’s not only inaccurate, but psychologically destructive, because it amplifies fear and makes their suffering worse.
Doctors are not all created equal. The first doctor your loved one sees may not have as much experience treating the specific illness, or even up to date knowledge of available treatments and the latest research. And without seeing a better doctor, you may not even realize this to be the case.
Most doctors work long hours and generally aren’t perusing medical journals in their time off. They have lives and families, too.
But getting additional opinions isn’t always about finding a “better” doctor. Sometimes, it’s about finding a doctor that’s just a better fit for your loved one and their unique situation.
In Megan’s case, we got two opinions, both of which ended up being in agreement in regard to her treatment, but we liked the second team of doctors a lot more than the first. Not only were they more meticulous, ordering additional tests and seeking opinions of outside experts every step of the way, but the level of care was better.
Always encourage your loved one to get second and third opinions. Whether it’s to find a more knowledgeable doctor, a doctor they simply like more, or even just a confirmation that their first doctor was in fact the best fit, additional opinions are important.
Step 3 – Write it all down:
When you live with a chronic illness, brain fog, fatigue and other types of cognitive impairments are extremely common. This can make it hard for patients to remember symptoms and specific events. The stress of a difficult diagnosis doesn’t help either and can cause these kinds of issues even when brain fog isn’t a symptom.
Encourage your loved one to journal and take notes on how they feel throughout the day. This will help them report back to their doctors more accurately, increasing the quality of care. As a secondary benefit, journaling can help your loved one to figure out if anything is triggering/exacerbating their symptoms. It can also help you both to come up with questions to ask the doctor at their next appointment.
Megan made sure to journal her symptoms for a few days after each chemo appointment. Chemotherapy often causes severe brain fog (known as chemo fog) and memory impairment, and she would often forget important details of her experiences and symptoms.
Journaling was the answer, and before every oncology appointment, we would go over her notes together to create a list of questions for the doctor.
Step 4 – Stay vigilant:
It’s important to trust your loved one’s healthcare professionals, but at the same time, doctors and nurses can and do occasionally make mistakes.
Remember, many chronic illnesses like Meniere’s disease cause cognitive impairment. Your loved one may not be at their best to monitor the course of their treatment. You need to be their eyes and ears, and it may fall on you to make sure that everything is going according to plan, especially when the plan is complicated.
In my experience, this is one of the more difficult aspects of being a patient advocate.
Megan’s cancer treatment called for chemotherapy every 3 weeks. It’s an exhausting, grueling, all-day affair. Part of this is because Megan decided to do a treatment that prevents chemo-related hair loss called Dignicap.
It works, but a lot can go wrong, and it’s extremely uncomfortable. Megan has to wear a tight silicone helmet that is pumped with coolant to bring the temperature of her scalp down to 3 degrees Celsius. This slows the blood flow to the skin and prevents the chemo drugs from reaching her hair follicles. It’s pretty ingenious, but it’s also horrible because it’s intensely uncomfortable (painful too), and she has to wear it before, during, and after chemo is over – about 5 hours in total.
As a result, each chemo day ends up being 8-9 hours long, and the nurses and medical staff have occasionally made mistakes. For example, during her first chemotherapy appointment, the Dignicap was not applied to her head properly and lost contact with the top of her scalp. She ended up losing the hair in the middle of her head where the cap wasn’t secured.
Now that I know what is required for a successful Dignicap treatment, I can make sure her nurses are on top of it, doing it properly. But it’s exhausting to have to pay such close attention and that’s just one example.
Other times, lab workers drew blood from a part of her arm that they weren’t supposed to touch, which complicated her treatment. At another chemo session, her IV wasn’t placed well and ended up infiltrating the vein, which caused a chemical burn on her arm.
Even when the facility and treatment are top notch, as it is in Megan’s case despite these examples to the contrary, things can and do go wrong. So it’s important to remain vigilant for your loved one during appointments and especially during procedures.
Step 5 – Be a Good Caregiver:
Being a patient advocate is only one part of the equation. If you really want to support your loved one, it’s also worth trying to be a better caregiver. But there is a right way and a wrong way to help. They need you more than ever, but in ways you probably didn’t expect.
The post below covers this in great detail, but I wanted to include a summary for you here as well.
1) Accept your powerlessness: It’s not your job to take away their pain. You need to acknowledge this, and truly accept it, before you will ever be able to make a difference for them. Your love and understanding is what they need most.
2) Take the time to learn about their experience: Try to understand what they go through on a daily basis. Ask questions if you don’t understand, don’t just guess. It may be hard for your loved one to articulate the answers but be patient. Really try to understand. Try to put yourself in their shoes. What might your life look like if the same limitations were suddenly placed on to you? The better you can understand their experience, the better off you’ll be. The love and support you give will be more authentic in their eyes.
3) Be with them but give them space when they need it: Never underestimate the power of spending quality time with someone you care about when they are suffering. Sometimes, just knowing we are not alone in our moment of pain is enough to carry us through. But the reverse is also true. There will be times when they need to rest and be alone and will need space. Never hold it against them or take it personally, because it’s not personal.
4) Validate their pain: Your loved one lives in a reality where almost no one truly understands what they’re going through. When they are suffering, most people won’t believe them or even care enough to try. But you can be the one who understands. You can be the one who believes. You can’t make them feel better, but you can make them feel heard. Show them that you know their pain is real.
5) Don’t get frustrated: Life with chronic illness is exhausting. It’s safe to say that your interactions with your loved one may not be as rational as you would expect under normal circumstances. And it’s easy to lose your cool when your good intentions are met with a reaction you didn’t expect. Pain can bring out our worst qualities. But if you can stay calm and keep a cool head, the tension will always pass. You can be their rock in troubled times.
It’s not always easy to be there for our loved ones, especially when they are suffering. But with the right approach, you can provide stability, safety, hope and comfort in what is often a devastatingly difficult experience to endure.
You help them navigate the complicated waters of medical care for their condition, and in a very real and tangible way, you can make a dramatic difference in your loved one’s quality of life.