Please welcome guest blogger, Samantha Grace, to Fighting Fatigue. You can read her bio below the post.
Getting diagnosed is like buying a lottery ticket hoping to pay off your mortgage when on welfare. You need to do it, but its not a matter of skill, but of pure luck. And when you have bad luck, like I do, then you know what I mean.
The Body Chronic isnt named that because its catchy (though it is), its named that because thats what I havea body full of chronic issues. I have chronic allergies, chronic pain, chronic endocrine issuesyou name it, I have it. And each one was a struggle getting a diagnosis.
Ive learned this lesson the hard waygetting diagnosed is an uphill battle.
Take getting diagnosed with insulin resistance, for example. I knew there was always something different with my body that caused me to retain weight like no other. I often ate less than my peers and tried to do more physically, but I constantly gained more weight. In a society that is so focused on size, I was blessed to finally find the Fat Acceptance and Health At Every Size movementswhich I believe in wholeheartedly. But it was finally a doctor who saw some other symptoms of insulin resistance other than weight, and finally tested the things I had asked doctors to test for yearsmy insulin and testosterone. Sure enough, both were elevated well beyond normal levels. For years prior, I had begged doctors to test this. Instead they tested my glucose levels (which, anyone with insulin resistance can tell you does not show an insulin problem) and told me everything was fine, when I was assured it wasnt.
So Ive learned a few things about getting diagnosed and getting good care over the years. Here are my top eight (yes, eight) tips on getting diagnosed.
(1) You have to know the right questions to ask, and ask them in detail. Dont expect your doctor to guess, because 9 times out of 10 they will guess incorrectly and your time will be wasted.
(2) Do your homework before you get there, if you have symptoms, join a discussion board or e-mail group that will be able to confirm or deny your beliefsreal men and women with these problems will be able to direct you to shortcuts on the map of diagnosis.
(3) If you get a bad vibe, dont come back. I still dont heed my advice on this one all the time; Ive been known to give doctors way too many chances to my own detriment. If you arent meshing with a doctor, dont set a second appointment (or set it and cancel if you just want to get out of there). Second chances are one thing if its questionablebut third and fourth chances are a waste of time.
(4) Keep copies of your tests. This will prevent a new doctor that you have to get due to number 3 to be able to diagnose you with less work or at least tell you whether the right tests were done. Doctors offices arent always willing to give you this, but its your rightso exercise it.
(5) Keep a diary of symptoms for a period of time before you see a new doctor. This is a huge pain, but its well worth it. If you eat certain things and then feel a certain way, this is a good clue. Maybe the doctor wont read through it with a fine-tooth comb, but you will at least have pinpointed some triggers.
(6) Dont be surprised if youre wrong. There are times when you know whats going on and cant get a diagnosis. But then there are times when you are wrong, and a good specialist can tell you this. When my urologist suspected that my problem was less interstitial cystitis related than pelvic floor dysfunction and vulvodynia related. It was a shock. I felt that he had violated some sort of codeonce youre diagnosed thats it. But his adjustment in the diagnosis and medicine and treatment made all the difference in the world. You have to have the right doctor to do this, so you must be ready to get more than one opinion.
(7) Tell them more than is necessary. Never would I have equated my allergies with my bladder problems, but they are more connected than I ever would have guessed. Telling my doctors this lead to better treatment.
(8) Not everything is a chronic illness. Sure you may be more prone to get sick or have trouble with certain things, but its not time to add another drug or treatment unless it is really something to treat. I find that once you have one chronic illness the tendency is to think of everything as the next one. Dont push a diagnosis that isnt there.
Rememberjust because a doctor hasnt pronounced something doesnt mean it isnt thereor that something isnt there. You re-work your approach every time and learn more about yourself, your body and your symptoms. Its sad that it has to be such a process, but because chronic illness is so misunderstood it will be that way for awhile, until more of us band together to create a community of knowledge and support. Hopefully I have been part of that for you, and you can join and be part of that for me.
Samantha Grace’s blog, The Body Chronic, creates a home on the net for support, laughter, and resources for those with PCOS, insulin resistance, interstitial cystitis, pelvic floor dysfunction, irritable bowel syndrome, vulvodynia and many more. Her other blog, The Only Baggage You Can Bring, is dedicated to her thoughts on politics, feminism, pop culture and local news. Both are updated often. She is married and lives in Michigan where she practices law full time while being a blogging superhero part time fighting injustice, inequity and idiocy through the power of cyberspace.
Barbara K. says
A very helpful set of advice. Thanks for introducing us to this blogger.