Don’t forget to end your visit with a “thanks for your time.” Grandma’s advice comes to mind: “You get more bees with honey.”
When is it Time to Change Your Health Care Team?
When my medication fails time after time, the emergency room visits become too close together, and my assigned diet is not working, I wonder: Is it time to find a new doctor? Sometimes doctors can get complacent with our care. We’ll have a short discussion about some new symptoms, but overall there are no major changes suggested in terms of new medications or therapies. No new testing is done, and you begin to get the idea that your doctor is very plainly saying, “Well, this is as good as it’s going to get, kid!” If you find yourself in that situation and you feel you cannot convince your doctor to find new solutions to your care, take that as a clear sign to find another physician who might know of another option.
Deciding when to make a change in your health care is a constant in self-advocacy. It’s important to do a serious evaluation from time-to-time to see if your needs are really being met by your doctor. You should always be evaluating your quality of life and demanding the best out of it. Your doctor should be on your team, in your court, and with their head fully in the game. How do you know if your current doctor is the right one for you?
Start by asking yourself these questions:
Do I feel like my symptoms are under control?
Are my questions being answered in a way I can understand?
Am I getting back full reports on my blood tests and other diagnostics?
Do I feel comfortable with the medications I’m on or do I think we could do better?
Does my doctor have enough time for me? Are my appointments being cut short or being rushed?
Is my doctor available to me during emergencies?
Is my treatment in the ER being managed by them? Are they or someone else in their office familiar with my condition available by phone or email in case of emergencies?
If you’re answering “no” or “not really” to most of these questions, then it’s probably time to start looking for a new doctor.
For me, and many other patients with complicated diseases, needing to find a new health care team after a few years is something that happens without fail. I’ve had three main quarterbacks for my medical team in the past five years. While I can say with confidence that each doctor was capable, qualified, and worked hard to help me manage my disease, they ultimately reached a point where they could no longer offer insight on what would be my next step. My disease is progressive; it was only natural that I had to move on from my team and transition to a new set of professionals who would be able to take on the next round of research with fresh eyes.
It’s okay to say that you need to move on from a team, even if the doctors have become an essential part of your treatment. It comes down to your quality of life and whether it’s getting worse, better, or staying the same. Quality of life should always be improving. If your doctor can no longer figure out how to bring your care to the next level, it’s time to let them go.
Letting Someone Else Advocate for You
There have been far too many moments where I’ve sat face to face with my doctor, having just received instructions from them, and all I can do is look at them and say, “Huh?” Painkillers. Exhaustion. Brain fog. We won’t always be able to put our best foot forward as a patient advocate when the patient we are trying to advocate for is ourselves. Before you find yourself in a bind, it’s good to designate a person in your support tribe and ask for their help. This person can be a friend, a parent, a relative, a nurse aid. And if you’re completely alone, there is technology and tools to help you stay afloat. (Hold tight, we’ll talk about that in a minute.)
What are the qualities you’ll want to look for in a potential advocate? Well, that’s kind of like saying you’d like to pre-select the nicest seat on the public bus you’re taking tomorrow. You most likely will not get to choose who will take you to appointments and help you through them. You’ll get whoever volunteers and you’ll say thank you with a smile on your face even if you can’t stand them. They don’t need a medical degree, or need to know your entire medical history. They just need to be able to take notes, ask questions on your behalf, and work to not make you feel like you’ve put an unfortunate dent in their day’s schedule. The last thing you need during the whirlwind of disorientation is a guilt trip for being a burden.
At this point in my life, I wouldn’t say that I’m necessarily “scared” to go to the doctor. I’ve been subjected to some pretty awful (yet, very common) tests and my fears of shots, scopes, and speculums are just about gone. There is still one thing that brings me uneasiness when going to see a new doctor. I fear that they will reject my case, citing that it’s too complicated or that they won’t have the time.
During a very bad flare-up where I was floating between internists, I asked my husband to accompany me to a new doctor. My husband was a great source of comfort for me as we waited in the office for the doctor to finish up with another patient. The appointment, for the most part, went very well. The doctor understood my disease and was very empathetic and had great suggestions. However, at the very end of the meeting he said he was sorry, but that he couldn’t take me on as a patient. He just didn’t have the time for such a complicated case.
I was crushed. We had been waiting for this appointment for weeks and in the meantime I was spread thin trying to keep a lid on my out-of-control symptoms. In the car on the way home my husband turned to me and said he was sorry it hadn’t worked out. He also made me remember that the doctor said he would talk to the two other physicians in his office, and that one of them would surely be able to take me on while he was in and out of the country for a family emergency.
“It’s going to all work out,” my husband said, having no way of knowing this for sure. “We’ll meet with the other doctors and if we need to, we’ll keep meeting with other doctors. We’ll find someone.”
It was exactly what I needed to hear at exactly the right time. It was something I would have told myself if I was alone in the car on my way home from this appointment. But having somebody else say it to me first made a world of difference in how I looked at the situation. I thanked him for telling me that and for taking me to the appointment. He brushed it off, but the truth is that if he weren’t with me, this would have been a long and tearful ride home.
Get over your humiliation of being carted around. Get over your concern that you’re putting people out by asking them for their help. Get over yourself because pride is a much easier pill to swallow than the reality of what happens when you don’t put your healthcare as your priority. You are where you are, and you’re going to have to make the best of it. Part of that is helping others feel as useful as possible in a situation where they also feel powerless. Remember, this is a key part of improving the understanding of your disease between you and your network of loved ones. Give them an opportunity to assist you. Here are some things you can do help your advocate help you.
Say, “Thank you, that was really kind of you to take time out of your schedule to help me get through my appointment.”
Ask them to help you remember questions or concerns you want to bring up but might forget about once you enter the exam room.
Give them a piece of paper and a pen and ask them to record some of the information from the doctor’s appointment so you can read it later.
Let them ask their questions too. They may not have a say in what treatment path you ultimately choose, but one more person in the trenches with you who has all the information is always an asset.
Start thinking about selecting the appropriate people in your life to advocate for you when you cannot do so for yourself. There is only one real requirement for someone being your advocate: They should give a crap about you!
Being a Proactive Patient
Don’t you just want to burn every health magazine and pamphlet that has the phrase, “Be a proactive patient” o
n it? It’s like, “Oh, I’m sorry. I didn’t know you’re not supposed to walk on glass or eat gas station sushi!” Of course, I’m being proactive. I’m not actively being negligent of my health. As much as the phrase irks me, I’ve made it my mission to redefine it from its nasty stigmatization and into something that makes sense. I want to be a proactive patient. I want to do my personal best to make sure my body makes the most of its core defenses. Below is a list of ways in which you can be that kind of “proactive patient.”
Fight to remain conscious when you are in the middle of doctor’s appointments.
Eat as close to a healthy diet as your condition will allow. Try to not give into the urge to eat cheat foods that may cause a flare-up.
Make sure to exercise regularly, even if that means doing laps around your hospital floor during an inpatient stay.
Stay on top of your payment plans for medical bills.
Be happy. When you feel well, see your friends, go to a party, have a night out, go on a date, see a new movie, or just lay outside in the grass and appreciate the sweet smell of not being in the emergency room.
Being proactive is about being responsible for your own happiness, but it also means being responsible for your weaker moments, as we discussed in chapter 8. Remember that preparation is your best friend when you are at your most vulnerable and your head is cloudy. When a serious issue needs to be resolved during a doctor or hospital visit, here are a few ways to keep you one step ahead of the brain fog:
Have a list of your personal information, including your full name, date of birth, address, contact person, and address.
Have a list of the medications you are currently on. Update this list as regimens change.
Have a list of your allergies to medications.
Get a medical identification bracelet.
If you think you won’t be able to remember the doctor’s instructions, ask them if it would be okay to record your consult on your phone, or if they can speak slowly so you can write things down on a notepad.
True Advocacy: Valuing Your Quality of Life
It all comes down to these three words: quality of life. That’s not just a phrase reserved for those on their deathbed, struggling to decide whether they should continue their treatment. It’s a phrase for all patients in all situations and I make sure to keep it lit up in the back of my mind for even my most trivial medical choices. Sometimes it’s as simple as deciding that your quality of life would be improved if you didn’t have to take the highway to get to your internist’s inconvenient office. But many times, it comes down to decisions like: Will the quality of my life change if this medication that improves my blood pressure also reduces my libido? Or will my overall quality of life be improved if I decide to have this surgery, even if it puts me out of commission in the short term?
Many patients forget to make their quality of life a priority when they face a long road of chronic illness. They feel undeserving of a quality life because of the inconvenience and disappointment their disease might inflict on the lives of those they love. Sometimes their doctors don’t offer choices, and they just decide to be treated by the book instead of asking for alternatives and seeking second opinions. There are many reasons doctors treat patients by the book. It’s important to remember that you are the ultimate deciding factor in your treatment. You have a right to refuse treatment you feel will not be worth the benefit. You have a right to seek out another opinion by another physician. You can say, “That isn’t good enough.”
When facing choices that affect your quality of life, ask yourself these questions:
Will it alter my appearance and disrupt my self-esteem?
Will it reduce my ability to enjoy good food, entertainment, or company with my friends?
Will it mean I’ll have to stop working and rely on someone or something else for financial support?
Will it give me anxiety each time I need to deal with it?
Does it make me depressed every time I think about it?
Will it cause more pain than I’m equipped to deal with?
What are my alternatives?
For me, it was important to test different medications to see if they could improve my condition. If I found out that they couldn’t help me and that major lifestyle changes were the only way to a better quality of life, it made it easier for me to accept and commit to those lifestyle changes.
Over the course of your illness, you’ll experiment with medications, change doctors, switch hospitals, have surgeries, adjust your diet and exercise regimen, and experience different sleep patterns. You will make mistakes, regret decisions you’ve made, and wish you had done things better or smarter. But it’s important not to view these blips in judgment as mistakes, but as opportunities to ask yourself questions like the following:
What am I willing to give up to feel my best?
What side effects am I willing to put up with?
How much time and energy do I want to commit to treatments?
How much suffering am I willing to endure?
What doctors do I trust?
What specialists are most knowledgeable about my disease?
How can I communicate my symptoms most effectively?
What preventative steps can I take to give myself the best chance of overcoming disease flare-ups?
These questions allow you to take a step back in the middle of medical chaos and examine whether you’re going in the right direction and remind yourself of what you want out of life. Are you comfortable with the way you’re being cared for? Have you been pushed in a direction you weren’t comfortable with? You always have the option of taking control and addressing the issues of living well with a life-limiting disease. You are deserving of living a life with dignity, honesty, and direction. So, demand it!
Chapter 10
Thriving with Chronic Illness
When I first started my blog, I decided to name it “Let’s Feel Better.” I thought that was what I wanted. Isn’t that what all patients want? To feel better? As I went through this great adventure of learning to live with a chronic disease, I did find my better days. They came when I had better doctors, better treatments, and better medication. Better was a concept that I ached for. I thought if my health got better, I would be happy again—my stress would decrease, I would be more independent, and I would have more opportunities in relationships and career. I did eventually get to a point where I was better. And I learned that better is not enough.
You will face mountains and molehills through the trials of your disease. You’ll pick your battles, stand your ground, and accept things you couldn’t have imagined accepting when you were healthier. Your doctors will tell you at some point that your symptoms have improved. Your treatments will keep things at their status quo. You will be told that you are a survivor. But, surviving a chronic illness is not enough.
Much of this book has been about learning to accept the limitations of your disease, finding joy in your new reality, and giving yourself the chance to excel in a way that best supports your health. What I hope you’ve also come to understand is that you deserve to thrive, to seek your ultimate happiness, and to not believe that feeling better than you did yesterday is enough.
Thriving with a chronic illness is an ongoing journey. When you have accepted your disease, learned to adjust your life around it, and reorganized your plans and goals, the next step is not just to feel better but to feel your very best and believe that you deserve to have the best doctors, the best treatment, and the most supportive people in your life as you move forward.
Are you only better? Or are you at your best? This chapter will help you access where you’re at. Will you be living in the moment or letting the stress of your disease sweep away your attention? Are you giving yourself the voice you need to power through the condemnation, pity, and judgments of others? Are you in a place where you’re making your treatment choices not just based on what will hit the hardest but also on what will give your life the greatest qualit
y?
Live in the Moment
Have you ever been on a romantic date but had something else on your mind? Maybe you worried about your kids at home with the sitter or were waiting on an important response from work. Instead of focusing on the good food and excellent company, you couldn’t stop staring at your cell phone. While most people are familiar with these small interruptions, those with chronic illness are constantly distracted by their body’s messages or by the fear that their body has a rude message to send soon. Is the dinner choice going to affect your stomach? Will it ruin your plans for later? Will fatigue sneak in during time with friends, forcing you to end the night early? Could brain fog make conversing difficult? Will a symptom need to be explained before you’re ready to speak about it?
It’s a struggle to live fully in the moment without wondering: What new symptom will knock me down next? When you’ve started to use the tools in this book to begin managing the chaos of your disease, you’ll be in a place where you can start to choose where you want to be. Do you want to be here at the table, talking to the person in front of you? Or do you want to be thinking about how to talk to your boss about why you had to cancel another important meeting for a more important doctor appointment? You will be able to give yourself permission to say: I am allowed to be here now. I can have this life no matter how hopeless each interruption may have seemed in the past. Yes, your disease will take up its own roomy space in your mind, but you can have a life that exists outside of your illness. Begin to visualize your disease and all its “what ifs” as a wet umbrella. Whenever you walk into the room of each new moment, envision yourself taking that umbrella and leaving it by the door.
Surviving and Thriving With an Invisible Chronic Illness_How to Stay Sane and Live One Step Ahead of Your Symptoms Page 14