By Liza –
As chronic illness warriors with multiple conditions going on we are probably more aware of our bodies than others. We have become exceedingly familiar with all our symptoms. It’s one of those things that is important so that we know when a flare is about to strike or if we are in need of extra rest after doing more than our bodies can handle.
But what happens when there is an unusual symptom that flares up or a series of unusual symptoms?
Google and WebMD are our best friends. I know, some or most doctors would frown on this. I have sat in the waiting room of the doctor’s office looking at a PSA poster advising you not to self-diagnose and talk to your doctor. The problem with that, for most of us who are chronically ill and combatting more than one condition, is that we are lucky if our doctor even knows more than a smattering of knowledge about our condition.
I have heard more than one of you share with me that your doctor didn’t even know about the condition you are facing, so, the only recourse we have as patients is to become as knowledgeable as we can about it. When new symptoms develop we go to trusted sources and our community of chronic warriors, for help. Then, we bring this information back to our doctors so that they have a jumping off point.
It becomes a little tricky when there are multiple conditions that cause these new symptoms, including our own chronic illness. Here’s an example straight from my life: I have recently been dealing with a pretty widespread rash.
It’s not a typical rash, meaning little red bumps all over swaths of skin. It feels bumpy and scaly and a little like dry skin and a rash but the redness only flares periodically, including when I get hot–even in the shower. Researching this I find it can be heat rash, heat intolerance eczema and Rheumatoid Arthritis related rash which turns out can be a periodic rash for no reason at all.
This goes on for several weeks with me trying multiple holistic and over the counter ways of treating it before I head to the doctor to see if I can get a diagnosis with the information I have. When I get there, I am told it is heat intolerance eczema and besides slathering up with lotion and a steroid cream there is little to do but try and keep hydrated and cool. But this is okay.
Why? Because my worst fear was that it might be just a rash related to my RA that would pop up periodically and there was nothing to be done. Alright, so there is little that can be done for the heat related eczema in the grand scheme of things but my point is settling for the lesser of two evils. The RA related rash would just be some huge question mark unknown that I would have to deal with while with this, at least I can do something and I don’t feel as helpless.
Many of us deal with settling for the lesser of two evils when new symptoms crop up. I can’t even count how many times I’ve heard fellow warriors exclaim with relief, “Well at least it isn’t [insert illness here]!”
We are relieved when it is something small, that we can tackle with a few resources rather than something that is going to take another specialist or more tests and/or more medicine. I know many of us refrain from going to the doctor when new symptoms crop up because we are afraid of the worst-case scenario. This can cause many more complications, but I definitely understand why some would choose not to go.
There was a time when I never glanced at Google or WebMD. When I’d go to the doctor when I was feeling badly without the panic or even expectation that there was something worse going on other than a cold or the flu. There was a time when I was not secretly praying for one diagnosis over another and I just continued life once the diagnosis was received.
Now, it’s this game I play in my head before going to the doctor, like I’m five years old and bargaining with the universe for the lesser of two evils in a diagnosis. This is just another facet of what it means to be chronically ill.