Fibro... Fear... Frustration!

It's hard not to be afraid when you have a disease like Fibromyalgia. It's a disease associated with stress and anxiety but it also can cause real anxiety. There are often so many symptoms, pains, and issues that crop up that could be anything. These issues vary and move and can be anywhere in the body. They could be a part of the fibromyalgia or they could be a symptom of something else, something more serious. Most times it's very difficult to tell the difference even for a medical professional.

Even our doctors often give up on us and stop testing to find out what is causing our new symptom or pain. They use phrases like "it's just a part of your fibro" and "nothing to worry about", but that isn't enough. It makes us feel forgotten and like we don't matter. So we go and do the research on our own and worry.

Sometimes these care providers are correct in their belief that it is simply a passing phase of the fibro, but other times there can actually be something new going on in our bodies that they are missing because they are dismissing our worries.

My husband gets a bit frustrated with me on occasion because I do my own research online. He worries that I'm going to find things to worry about that aren't within the realm of reality. He says often "this is why doctors hate the internet". But honestly someone has to do the research. If I could trust the doctors, I wouldn't have to look stuff up on my own. I've done far less of my own research lately unless it is simply to determine what certain test results might mean for me or what the next step might be, because my current doctor is much better about being vigilant with testing.

I am fully aware that trying to diagnose someone solely from a description of symptoms is not easy. Tests and specialists are needed to find the answers we need. I'm not looking for an answer online, simply possibilities.

There comes a point in chronic illness where one has to take some responsibility for their own health and care. Even with a doctor you trust, one needs to be aware of their own body and their options for care. One needs to be aware of the possibilities that might need further examination. When you have a chronic illness you cannot expect your doctor to know everything about it or you. You are still the person who knows your body best. You know if something is out of sorts.

Every pain doesn't mean something new or serious. Each muscle swelling doesn't mean a need for fear or concern. However, there are moments when a pain remains longer than it should. There are times when a symptoms begin to combine into something that does become concerning. In those moments we feel fear. Whether it makes sense or not, we become afraid.

When you live with chronic illness there is always fear. There is fear that you'll get worse, fear that you'll be in such terrible pain forever, fear that you won't be able to do this or that, there is always fear associated with a chronic illness. It is a fear that is difficult to explain to someone who hasn't experienced a similar illness but it is very real.

It is so easy for it to be so much more than this though. New pains bring new concerns. Symptoms that we cannot explain or have not had in the past make us wonder what more we might have to endure. And then when our doctor or doctors can't find an answer for us that makes sense our fear often turns to panic and frustration.

Then at some point you let it go. You don't give up but maybe you find you have to accept what the doctors are telling you. Sometimes they are actually right. It's the times when they aren't, when your fear was correct, when it takes so much longer to find the real culprit hiding in your body, that make you angry.

I am so thankful that currently I have a doctor who insists that I see specialists and have testing and that I don't become complacent in the belief that it's all "just my fibro". She has never uttered those words. She is ever vigilant and refuses to let some sneaky illness hide inside my fibro until it's too late. Of course sometimes I fear that I don't always notice symptoms in time because I've been trained to think it's "just the fibro".

Chronic illness and fear so often go hand in hand. I know for me this is true. When you live a life filled with so much physical pain and emotional strain, I'm not sure how you can avoid the fear. So please remember that when you are talking to your friend or loved one who has a chronic illness.

Don't dismiss their symptoms or their fear because it seems like they always have new pains or new worries. It is all very real for them and just because there is always pain doesn't mean that they are wrong to be worried for their own health. Sometimes we are the only ones that are paying enough attention to catch that one time that it is serious. So don't dismiss us or criticize us for being aware of our own bodies enough to know when we need care. Don't diminish the value of our opinion simply because fear is a natural part of chronic illness.