Advocacy means more than just fighting for something you believe in.
When you’re sick is when you need to be your best advocate. I am surrounded with love and support and often need help through this illness, but that still doesn’t mean anyone is going to take better care of me than ME, particularly when seeking medical help. When that little voice inside your head or your gut is telling you something is wrong and you’ve been dismissed by a doctor -- or two maybe even three -- or told there is nothing else they will (not can) do, don’t listen to the doctor; listen to your voice/gut. I am NOT advocating for not following the doctors instructions without having the conversation with them about why you don’t want to do it their way. A good doctor will listen and provide alternatives (if there are any) or perhaps recommend a different approach after listening to your concerns. You do yourself a dis-service when you pay lip service to a doctor and tell them you’ll follow their recommendations when you know you won’t. Find another doctor. If you can’t be honest with them, that’s not a good patient/doctor relationship.
Follow through and find another doctor. Ask friends for referrals to doctors they like, take and bring pictures of your symptoms (if possible). It can go a long way to helping the doctor understand what may be going on. Be prepared to tell them about other doctors you have seen and what they have said. They need the info so they’re not repeating tests and hopefully will look at it from a different angle than the previous docs. Doctors, even the great ones, are not miracle workers.
Additionally, try to separate the emotional from the physical, if it’s not a doctor that can help you with the emotional side. I am by no means saying do not bring emotion to your doctor's appointment; it’s important that they know that you’re a human being and just how greatly you are being affected by whatever it is you’re there to see them for. If you're like me, then talking about what is going on may make you emotional any and every time I talk in depth of what I go through. Thus, the total and complete separation of the physical/emotional simply may not be possible. That’s okay -- don’t beat yourself up for that! But there are strategies and coping mechanisms I’ve put in place to help me and perhaps you could too. Being able to talk medically without too much emotion is important. Another way to handle this would be to have someone come with you to the doctors appointment. Someone who can remain calm and listen to what is being said by you and the doctor--perhaps they could even take notes. Someone who can help you communicate and stay on track with what you want to get across to the doctor.
To be perfectly honest, I could not speak about my illness to anyone other than my almost grown children and very close friends for the first eight months or so. I had my husband tell everybody that needed to know what the initial diagnosis was, details of the surgeries and follow-up appointments because I couldn’t even form the words without completely falling apart. Four years later when I have to tell my whole story, I still cry because instead of healing over the last five years I’ve had traumatic incidents and multiple ER visits/hospital stays, and though the cancer is gone, surviving the effects of it has been the hardest thing I’ve ever done. It’s the biggest fight I have ever had to face and I used to jump out of airplanes for the Army!!!
Another suggestion I have to help you and a doctor to work/move through what may be going on is…Take the time to track your symptoms. How often do they happen? How long do they last? Can you describe what it feels like? The more you can prepare for the doctor’s appointment, the more you can stay on track with symptoms and the more likely you are to get additional testing or additional help.
As a self described “professional patient,” the job of advocacy does not stop. It took me two years to get the multiple sclerosis diagnosis. Within those two years, I was refused by one doctor who kept moving my appointment back instead of seeing me and finally his receptionist said to me, “You don’t have MS”... over the phone. This doctor had never even laid eyes on me and couldn’t be bothered to see me. Just trying to get in with the neurologist (which is required to get a CT scan to look and see if it could possibly even be MS) took a long time as well. Luckily, I had a PCP at the time that would send me to another doctor/specialist after continuing to complain about a myriad of symptoms (MS is different for everyone). Over the two years before my MS was confirmed by two spinal taps, I was told by doctors things like, “You’re just getting old.” (I was 38.) I was told I had even had an infection of my brain. (Yes prior and we didn’t know it??) I was told I needed to just relax and destress. (I was going to school full time for my Masters Degree, raising three kids and working in manufacturing management with responsibilities running production 24/7.)
I knew what I was experiencing was not normal. I contacted the only person I knew had MS. I didn’t know her too well, but she was kind and eager to share. I got in front of the right neurologist who ordered the spinal and she confirmed the diagnosis. On Oct. 31, 2013, I learned I had MS. On Nov. 1 and I started my first round of steroids (certainly not my last) the very next day.
Most recently, I had been experiencing chest/back pain and I mentioned it to all my doctors over the course of several weeks at previously scheduled appointments. I even went to two different ERs (only because at one doctors appointment they sent me to the ER; the other because I was in so much pain my husband took me) and a chest X-ray came back negative. So, aside from getting the pain under control no one did anything. So after five weeks of dealing with this, I realized I had accepted a whole NEW pain. In addition to everything else that causes me pain or discomfort, I now accepted pain in my right chest that shot out my back almost constantly all day long. I finally woke up to the fact that I had accepted this and decided I wasn’t going to accept it any longer. There are certain pains and symptoms that I understand doctors can’t do anything about for me. They are not miracle workers and you'll hear me say that more than once. But I went to my oncologist office and said, “I’m not leaving until you do something. This pain is bad.” So the doctor ran some cultures and that night he called and told me and my husband to get to the nearest ER so I could get admitted. I had a chest infection of some sort that could kill me. Long story short, I spent the next 14 days in the hospital and had the port removed from my right side and a new one put in on the left side of my chest. Had I not insisted that he run more tests, that infection could’ve gotten in my blood and killed me easily and quickly.
Not every one of my stories of self advocacy is that intense or that life threatening, but each time I can stand up for myself and get what I need, I may make my quality of life a bit better or perhaps make myself a little more comfortable. Sometimes that is all you need to keep fighting another day!
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