I have to say this; for a friend, a fellow spoon, who is dealing with her Rheumtologist telling her she doesn’t have Lupus due to not having an ANA positive blood test results. Which is Lupus 101 people! Many people only test + sometimes, Some people test + all the time (like myself), and others never test ANA positive at any point in the course of their disease. She has also dealt consistently with unsupportive or negligently supportive family members, due to their lack of understanding or lack of belief in her having the disease.
I know there are many others out there dealing with doctors and family members being unbelieving. I was lucky I always have my parents on my side even if it takes a while for me to find a way to explain an issue so that my parents understand it. It’s not like they can back something up they don’t know!
So to my fellow Spoonies and dear friend,
Don’t let them convince you that you are wrong about what you are feeling happening to your body. If you know something is wrong or right and the doctor says otherwise, for now, work on home remedies to help with the symptoms, but do research of your own and search for new doctors. Get diagnoses slowly. Push and don’t stop pushing. Don’t let people around you discourage you! Go for the littler diagnoses first, then get the specialists to realize the connection and make the large combined diagnosis. For example Thrombocytopinia, Arthritis, Fibromyalgia, Raynaud’s Syndrome. All it takes is one specialist finally making the connection between symptoms to finally move forward with a proper diagnosis.
No matter what, I am the only person who can feel what is going on inside my body. Part of the problem I dealt with growing up was being told what is going on with my body by doctors and what needed to be done to fix it all of the time. Really, I was lucky if a doctor bothered to explain what was wrong in any abridged fashion. Some doctors still treat me like this as an adult. They forget that they are only my medical advisors, they don’t make my medical choices for me. Doctors have the training; but they can’t actually know what is happening to my body past the signs that they see in the blood work and looking at my body and the symptoms that I explain in what words I choose to describe them in.
Not having positive ANA in your blood-work, as well as not having the average numbers on any other blood-work the doctor decides is necessary, will mean the doctor makes an assumption that isn’t necessarily correct. Let me ask you, how do we explain people with auto-immune diseases who never test positive? We can’t explain that by doctors’ “rules.” We can only explain it if it is understood that not enough is medically known about our disease yet, so a lot of what patients are forced to rely on, as a 24/7 hotline doctor, themselves alone.
I was raised with this disease. I was taught to notice, feel, and decipher all of the sensations that are occurring in my system. Where it became difficult (for all of us) was trying to find words that just don’t seem to exist in the English language to describe what I am feeling to someone who has never felt the same sensations. It was always exciting when I was able to latch on to some weird mangled phrase or analogy that finally clicked in other people’s heads. When that happened, my parents would help me figure out a way to speak doctor-ese so that the doctor, who is listening for key words and will often dismiss anything else (depending on the doc), will understand the symptom I am explaining and be able to properly treat me. It’s a process (I’ll tell you what!!)!
Certainly the concept of scales/ratio that we autoimmune patients are always being asked to describe (“On a scale of 1 to 10, how much does it hurt?) is so skewed that any common understanding we might have had stops right there–and frequently goes backward to the point where what I am actually experiencing can become minimized. The other person walks away with an incorrect view of my situation which is also demeaning to myself and my disease. When this happens, a person like that, rarely has the ability to grasp the difference even if I try to teach it to them.
So, fellow spoonies and dear friend, Don’t let them convince you that you are wrong about what you are feeling happening to your body.