It’s cold in the emergency room.
I was waiting for the ER doctor to come back as my mind started to drift. It wasn’t just the temperature either. It all felt so sterile, so emotionally cold.
It’s something I’ve noticed a lot over the years; that often unfeeling nature of modern medicine. Was it always like this?
I sat up as the ER doctor came back into the room to go over my options. My finger was badly infected and had gotten a lot worse over the past week. The antibiotics weren’t working.
Technically speaking I had a paronychia (AKA an infected cuticle) but another doctor had led me to believe that the infection had spread throughout my finger. I was scared and in a lot of pain. So I asked questions. I just wanted to understand what was happening. I had seen three separate doctors in past three days, all with different explanations.
“Your other doctors weren’t ER doctors. Do you know how many paronychias I’ve treated?” She asked somewhat rudely. She was quickly running out of patience with me and all my questions. “Hundreds and hundreds.”
Eventually, I made it clear that I was afraid, that I just wanted to understand, and she warmed up a bit. But it left me with a bad taste in my mouth and flashbacks to similar experiences I’ve had with doctors treating me for Meniere’s disease.
I don’t know why so many doctors seem to be so completely devoid of compassion. When we are afraid, a little empathy goes such a long way. We look to them for help when we’re weak, vulnerable, and in pain. And far too often, we’re left feeling so very alone.
For better or worse, we have to be our own best advocates when it comes to our health. Especially if you suffer from a rare and chronic illness like I do.
I’ve made a lot of mistakes over the years, but I’ve also learned how to fight for my health in ways that make a difference.
1) Take the time to understand your condition
The first step to being your own best advocate is difficult, but absolutely necessary: you need to take the time to understand your condition.
The problem is that so many chronic illnesses can be overwhelmingly complicated. Meniere’s disease, for example, has no known cause and no known cure. Everyone experiences the symptoms differently and what works for some people, doesn’t work for others. In the face of such complexity, it’s easy to get frustrated. But it’s important to fight for understanding.
Knowledge offers us a measure of control through an otherwise chaotic experience, though it’s important to keep in mind that it’s a double edged sword. The wrong information can make us worse. When I was first diagnosed with Meniere’s disease, so much of the information I found online filled me with anxiety and dread.
It’s important to find the information that leaves you with a sense of hopeful optimism, or at the very least, a sense that you can do something about your situation.
2) Know your data
Keeping track of your health is another important part of being your own best advocate. In my opinion, seeing your doctor every so often is not enough. It’s too easy to forget potentially important details in between visits.
A better solution is to actually keep track of your health. Take notes on how you feel. Keep a record of your symptoms and the treatments you try. Keep track of what makes you feel better, too.
Keeping track of everything can be tedious but it serves an important purpose. It allows you to accurately report back to your doctor, while at the same time giving you a better understanding of your illness.
When you have the right data in front of you, patterns emerge. Suddenly you will start to notice the things that seem to make you feel better or worse.
It gives you the power to take better care of yourself and improve your health.
Pro-Tip: If you have Meniere’s disease, use this free tool I created to track your symptoms and lifestyle.
3) Find a great doctor
If you suffer from a chronic health condition, one of the best things you can do for yourself is to find an amazing doctor.
It’s easy to settle for the doctor you know, or the one that’s convenient, but I feel that’s a mistake. A good doctor can change everything. A bad doctor can break you.
The first doctor that treated me for Meniere’s disease nearly destroyed me. I’ve never felt more alone or more afraid. But my second doctor was able to put the pieces back together. He showed me a future where I could be ok, and eventually I was. Before I met him, I didn’t know it was even possible. He opened that door for me.
No matter what kind of illness you have, figure out what kind of specialist you should see, and find one that you like. If your doctor makes you feel uncomfortable for any reason, give yourself permission to find a new doctor. Living with a chronic illness is hard enough, you don’t need the extra headache.
Pro-Tip: Use www.Healthgrades.com to find highly rated doctors near you.
4) Don’t be afraid to ask questions
Never settle for an explanation you don’t understand, especially from a doctor, and don’t be afraid to ask questions. Questions are crucial to understanding your condition.
In my opinion, a good doctor is one who is always willing to answer your questions, someone who is always happy to explain why they are writing a prescription or suggesting a treatment. If you’re doctor isn’t willing to answer your questions, find another doctor.
This same mindset should also apply outside of the doctor’s office. If you find a support group, online or in person, or a credible health organization, don’t be afraid to ask questions! More often than not, people are happy and willing to help when they can. But you’ll never give them the chance if you don’t speak up and ask a question.
Pro-Tip: If you have a vestibular disorder, or any condition that causes dizziness or vertigo, the Vestibular Disorders Association is an incredible resource.
5) When something isn’t working, try something else.
Routines are a big part of how I manage my chronic illness, but sometimes, they hurt me more than they help. The problem is that it’s easy to get stuck repeating mistakes.
Not everything that you try, whether your doctor suggests it or not, is going to work. At times, it might feel like nothing is working. Eventually though, something will.
When something isn’t working, and you’ve given it an honest try, let it go, and try something else. Change is never easy, but it’s worth it once your health starts to improve.
6) Remember 1MT 1MT
Best-selling author, Paralympic skier, and motivational speaker Josh Sundquist often talks about his personal motto for success “1MT 1MT”. It stands for one more thing, one more time.
It means doing one more thing than you feel like doing. One more thing than you planned on doing. To Josh, the difference between failure and success, is often doing just one more thing, one more time.
When you live with a chronic illness, it’s so easy to lose hope. It’s easy to crumble under the weight of the odds that seem so stacked against you. But the truth is that there always is hope.
You can do one more thing to improve your health. You can find one more doctor. You can try one more treatment or read one more book.
No matter how bad things may seem, you can always do one more thing, one more time. Never forget that.
“It’s not selfish to love yourself, take care of yourself, and to make your happiness a priority.” – Mandy Hale
Maybe one day the world of medicine will find compassion on a broader scale, but in the meantime, we can fight for our heath, ourselves.
We can choose to say no to a doctor who won’t listen or a situation that makes us feel worse. We can increase our understanding and learn how to feel better in the process.
No matter where you are, or what illness you have, you can always improve your wellbeing and happiness by being your own best advocate.
Because, after all, no one will ever fight harder for your health than you can.