Pacing Myself?

After several weeks of waiting for an appointment that was delayed by rain, snow, and my cardiologist receiving all of his new patients in January, I finally dragged myself into the cardiology office this past week. I was the youngest person in the entire building. I could tell I was getting stares from some of the other patients, none of whom seemed to be below fifty years of age. A few of them ever whispered as I walked past and signed in with the receptionist.

The receptionist was sympathetic and curious- I could tell she was trying to figure out why I see two different cardiologists, with entirely different specialties, on a regular basis. Until a few weeks ago, I was too, so I didn’t blame her. The nurse called me after only a few moments, which seemed to irritate a few of the other waiting room occupants, but they didn’t know I was only seeing a physician’s assistant. After an uneventful EKG and a bit of joking around with the nurse, I was seated in a cold room and my carefree facade began to crumble.

You don’t know the low points of chronic illness until you almost start crying on the arm of a physician’s assistant you’ve only met a handful of times. She was understanding, but not unnecessarily sympathetic, when she delivered the news that had kept me out of the doctor’s office for longer than it should have. Time to start the pacemaker process.

This whole visit would hardly be worth blogging about, but one thing stood out to me. One thing that never, ever happens to me at doctor’s appointments. 

Everyone at the office was totally, 100% convinced that I was sick. 

Most appointments I go to are marred by the “but you don’t look sick,” or the “have you tried therapy?” Others are ruined by “but if you just lost weight,” or “I’ve heard good things about yoga.” I’m always trying to convince my doctors that I’m sick. That they need to listen to me. That they need to trust me, because I know my body better than anyone else could.

This time, it was my doctors trying to convince me that I was sick. After years of being told my fainting spells, dizziness, blacking out, and headaches were all in my head, caused by anxiety, or simply undiagnosable, all the negativity started to sink in. It was hard to believe it when I first saw my cardiologist, and before he even introduced himself, he told me that I was finally in the right place. Before my cardiologist even told me his name the first time I saw him, he told me that my fainting spells weren’t all in my head, and that I had a real medical problem that we would work together to solve.

There are horrible doctors out there. They will try to tell you that you aren’t sick, or you aren’t sick enough. They will try to belittle you and demean you. But there are also excellent doctors out there, that want to help you. It’s hard to remember sometimes, especially when you seem to be seeing bad doctor after bad doctor. Luckily, I have finally found a good team of doctors who are trying their hardest for me. And with some luck, eventually the number of doctors who are good for people with chronic illnesses will grow. That’s why I advocate. I advocate to change the way that doctors look at patients with mysterious symptoms, or uncommon symptoms. I advocate so that other people can find great doctors like I did.


Chronic Counseling

Doctors often suggest counseling as a way to treat chronic illness. It’s so frustrating to be told your very real symptoms are all in your head. We hear it time and time again, along with “change your diet and exercise,” “have you considered yoga?” and worst, “maybe you’re just lazy. ” Although diet changes, yoga, and counseling can help individual cases, they’re not a cure, and the pressure many of us feel to get “well” can keep us from wanting to try things- and fail. But the truth is, chronic illness can take a toll on your mental health. That doesn’t mean your symptoms are all in your head, or that mental illness shouldn’t be treated with care. For years, I refused to go to counseling. I knew my symptoms were physical, but for years I was told my syncope and rapid pulse were panic attacks. I didn’t need doctors, I needed a psychiatrist. Finally, I was diagnosed. But after being born sick, living differently than kids my age, and being told I was making it all up by every doctor I had seen? I was angry, confused, and scared. These were all emotions I had every right to feel, but they were also emotions I needed to work through. Finally, I started talking to a counselor about my chronic illnesses.

Although I don’t feel any better physically, seeking support for my chronic illnesses has been one of the best choices I’ve ever made. Taking time to find the right counselor made all the difference, as I couldn’t share my concerns with someone that didn’t make me feel comfortable. Once I found the right guy? He became one of the best parts of my medical team. He’s not afraid to advocate for me, help me find resources, and most importantly, he provides thoughtful exercises and feedback on my experiences as a chronically ill young adult.

Counseling isn’t for everyone, especially as much as it gets shoved in our faces as a way to cure us. It’s easy to believe it can’t help. I know I believed that counseling was a waste of time for years.

Support groups and counseling can be for you though, as long as you find the right ones. Don’t be afraid to see several counselors until you find the right one. And remember, you’re not making your illnesses up. But you can find someone who will support you through the emotional fallout.

Stepping Stones

I’ve always been scared to advocate, to really put myself out there. Although I’ve been interacting with the Spoonie and Chronic Illness communities on tumblr and twitter for a while, I never considered myself an advocate. I put my story out there, shared advice, sent nice notes to people in flares. But I didn’t consider advocating. 

Then, people started coming to me. Asking questions about how I was diagnosed, what I do to reduce flare times, how to ask their doctor for a referral. I was scared at first- what if I told them the wrong thing? I knew what had worked for me, but that wouldn’t work for everyone. Through Spoonie Chat, I started to build confidence. I joined groups for my chronic illnesses. I started silently following other healthcare and advocacy chats on twitter. I started answering questions when they were sent my way- yes, I know who you ask for ring splints. Here’s a pamphlet about Ehlers Danlos for your new doctor.

I’m still not where I want to be with advocacy yet, but I’m growing. I like thinking that I can help people avoid the years of misdiagnosis I had, or at least shorten their wait for the correct diagnosis, by educating the public and the healthcare system. I like to think that I can make a difference.