I have wondered for some time if I should write about this topic on my blog or not since it can be quite controversial. Medical experts use different treatments and many patients have various experiences.
It's not my intention to upset or point fingers at anyone with this post but I wanted to share what I find to be the three most common misconceptions about my chronic illness.
Remember, this is my personal opinion. I am aware everyone with the same condition can have another point of view on this topic.
I thought I would debunk these myths, find the reasons behind them and talk about the honest truth what fibro really is. After all, it's my body so who knows it better than I do?
1) Fibromyalgia is not real.
Fibromyalgia is a physical disorder characterized by widespread chronic pain and fatigue.
Some doctors unfortunately still believe it's not real but luckily that's slowly shifting.
1.1 No diagnostic test
One of reasons why people tend to believe fibromyalgia is not real is because there is no clear diagnostic test. I got my diagnosis after 10 years! Usually doctors give you the diagnosis after many medical tests, when other problems are ruled out.
You can read my story (from first symptoms to diagnosis) here.
1.2 Lack of scientific research
There is no diagnostic test because unfortunately, specialists are still unsure what the exact cause of fibromyalgia might be. Many of the "found" causes don't apply to all patients.
Although I've seen more and more studies done over the last few years, due to the fact that there seem to be more and more people who have fibromyalgia.
Hopefully we'll get answers some day.
2. People with fibromyalgia are faking it.
I think most of us who have fibro are used to get these reactions. But it still makes us feel less worth, frustrated and alone.
1.1 Invisible illness
The main reason people believe we are "attention seekers", is because fibromyalgia is an invisible illness. Our whole body is aching but you can't see anything on the outside. Only those who see us every day notice a difference in our appearance and actions.
Humans usually need to see things with their own eyes to believe in something. They want proof. Someone who breaks a leg obviously can't just stand up, but when someone with an invisible illness needs to sit due to pain and fatigue it's misunderstood as "laziness".
2.2 Every day is different
The unpredictable and sometimes even contradictorily looking manifestation of our illness seems to confuse people.
"You did something today but you can't do the other thing tomorrow?"
People with fibromyalgia and similar chronic illnesses have a battery that never fully charges. Some days we wake up with 50% energy level, others only 5%. Some activities take up more energy than others. Even the time to recharge our battery varies from day to day.
3. There is a cure.
If there was a cure we would be all healed by now.
Doctors with little education of auto-immune diseases often misdiagnose people who have other diseases. Some of these misdiagnosed cases come out to the world as cured from a certain treatment they had.
As much as I'm happy for those people, this means they probably had no fibromyalgia in the first place but a condition with similar symptoms.
3.2 Treatment does not equal cured
Unfortunately there is still today no cure for fibromyalgia. But there are multiple treatments that may help you to navigate through your life.
Most patients usually are submitted to a combination of multiple treatments such as medication, physiotherapy and chronic pain management. While others find for example acupuncture or becoming vegan more beneficial.
That does not mean the illness is gone. We still are ill but treatment makes life more manageable. Some days treatment helps, others we cannot find any pain relief.
Fibromyalgia is a very personal experience. Every body is built differently, everyone's lifestyle is not the same. Don't compare patients or think what works for someone will work for everyone. We already get a lot of judgement so please think twice before you make a statement. At the end of the day you don't know how someone feels on the inside.
Thank you for taking the time to read this article. You are helping us to raise more awareness. It's very much appreciated.