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Q&A, Our Way

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Questions and Answers (Q&A), Our Way
Insightful, Conversational, Encouraging,
Long-winded, and from Experience


Q & A Index

Q. Why doesn't giving people my diagnosis or a list of my symptoms help them understand?

Q. I feel anxious often. But treatments for anxiety don't seem to work like they are supposed to. Practitioners don't seem to understand what I am talking about when I say I have anxiety. Can you help me communicate about my anxiety better?

A. Giving a diagnosis or naming a symptom tells nothing about degree of severity or what it is like to live with a condition or symptom for you! Often, giving the diagnosis or symptom list prevents you from communicating other, possibly more important information, for a situation. The same symptom or condition can affect different people in different ways to different degrees so the name is not enough. Our lives have gotten easier since we've been practicing getting more specific about how a symptom affects our lives. Determining who to tell which part of that to helps even more.

Which paints the clearer picture: frequent insomnia, fatigue, and cognitive problems or
"My 3 times a week sleeplessness leads to such morning exhaustion I feel more tired than when I went to bed. I have to rest after I get dressed, lying flat for 20 minutes in the quiet. I can't always remember how to drive to work. I now make wrong turns on familiar routes about twice a week and its gets much worse after I push myself work more than 3 full days in a row."

Disability determination agencies need to know how a symptom prevents you from working, or worsens because you work. Receiving a long list of symptoms with no ties to how they affect work could make the reader suspect the list of symptoms was copied from somewhere.

The symptom of anxiety is a good one to discuss here. So many with CFS, FM, and OI, tell us of their anxiety and expect us to know what that means for them. It is an important and common symptom, but not very descriptive, and it is often the result of many other symptoms and not primary. Teasing out what is else happening which may have led to the feeling of worry, nervousness, or unease typically referred to as anxiety is vital and may lead to more targeted help.

Recently (summer 2006), Toni had two people tell her of their main symptom of anxiety. After a number of questions about anxiety as a symptom, both people discovered anxiety was not the useful description they thought it was. She wrote about it:

One person was collapsing from pain and fatigue after only 10 minutes of everyday housework activity and she was calling it anxiety. Collapsing from activity is typical of orthostatic intolerance (OI), and a reason FOR anxiety, but, not a true description OF anxiety. 

Another realized her anxiety was the result of many other symptoms accumulating after pushing and pushing. Being unable to complete work because of fatigue, sleeplessness, and cognitive processing problems led to her being anxious over being unable to keep up with her work. 

Good questions about any symptom include what does that feel like?  where do you feel that?  how often do you feel this way?  what are you usually doing when you feel this way?  how long does this sensation last?  what do you do to stop such feelings?

Doctors rarely ask the kinds of questions required to understand what patients mean by "anxiety."Doctors don't usually have our symptoms, therefore, their only knowledge is what they've read and what they hear from us. 

In addition to our doctors' problems of understanding us, most of us are really lousy describing what's going on with us:
  • We remember the worst of an episode, not necessarily how it started. We remember being in bed, not understanding nor remembering all the things associated with relapse. We leave out helpful details.
  • We bring a list of symptoms which is too long and too much for most doctors to get through or no list at all.
  • We name symptoms instead of describing them. This saves energy, but leaves out severity and details needed to pick up patterns. There are times when it is really important to describe symptoms and the circumstances in which they develop in depth, when we are talking to our most trusted doctors in extended office visits, for documentation for disability benefits.

More questions to ask yourself about symptoms:

How much activity preceded them and what kind?
Was there extra activity in the 1-3 days prior? There is often a delay.
Was I pushing myself?
Is the pain, numbness, whatever on both sides of your body or just one? front or back?
Is the sensation pulsing or steady? 
Is the symptoms worse when you lie down, stand up (doing dishes, waiting in line), or
         sitting for prolonged time (at the computer, during meals, during doctor visits)?
Do symptoms worsen as you try to read or otherwise concentrate?
Are symptoms more aggravating when trying to do two things at once or with
         background noise/activiy?
Do they happen more when the lighting is bright or dark?
Does the sensation change because you ate?  slept?
Does it remind you of any other times you had this symptom?
Do you only get this symptoms in certain enviroments? hot or cold? humid or dry?

Naming symptoms is a good first step. Usually more description is needed to get help from disability agencies, from doctors and counselors, or from your loved ones. The more you figure out, the more you can help reduce your symptom triggers. Ask  yourself about what is happening to you and listen some descriptive terms.

Keeping a symptom journal can be work and somewhat depressing. But it could also point out important clues! See our Resources section for Tracking Symptoms.
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Updated Dec 8, 2021