Explaining a medical condition to others can be difficult - knowing what to say and how to say it is something that needs consideration. Having brain fog can make impromptu explanations even more challenging.
Most people don't have much understanding about Fibromyalgia and many people have misconceptions about it. Deciding whether to discuss your symptoms and how fibro impacts on your life depends on your own personal situation. Usually I feel that talking about it causes more problems than is helpful but I do think you feel very lonely if family and friends do not at least understand you have an illness.
If you tell someone you have fibromyalgia you get a variety of reactions from "what's that?" to "My mother has it!" If the conversation continues I find that they know the name but don't really understand Fibro or what their mother/brother/sister/ experiences. So if they ask questions then I explain...
I usually explain it as like having the flu, with the exhaustion and aching and moving pains, a flu that never goes away. I feel that most people have at some time experienced a flu and been laid low with it for a day or two and therefore they will understand this analogy. If they want to know more then I explain fibro fog as something that affects the memory, a kind of forgetfulness - forgetting words, names, conversations. When you are trying to explain your condition to family and friends be prepared for well meaning or not so well meaning comments, misunderstandings and doubting looks. Many kind people will give you suggestions to improve your condition so please realize they are just trying to come to terms with your struggles and be helpful.
Many people tell me they alter their explanation depending on who they are talking to and describe the condition to something that the person can relate to such as a severe hangover that does not go away, a migraine that is all over the body or jet lag that does not stop.
If you are looking for a short quick explanation to remember and say here are some suggestions to choose from:
Many people tell me they alter their explanation depending on who they are talking to and describe the condition to something that the person can relate to such as a severe hangover that does not go away, a migraine that is all over the body or jet lag that does not stop.
If you are looking for a short quick explanation to remember and say here are some suggestions to choose from:
"Fibromyalgia is like arthritis in the muscles."
"Fibromyalgia is a complex, chronic pain condition that affects the brain, nervous system and the muscles."
" Fibromyalgia is a central nervous system disorder that has three primary components - pain, fatigue and sleep problems."
"Fibromyalgia is like a migraine all over your body."
" Fibromyalgia is a chronic condition with widespread pain in muscles and ligaments as well as fatigue and cognitive dysfunction."
"Fibromyalgia is a rheumatic disorder that causes muscle tenderness, pain and fatigue."
If you are looking for a longer, more in depth explanation here are some suggestions:
- Sue Ingebretson's Letter for People Who Ask You About Fibromyalgia
- The Fibromyalgia Letter
- The Spoon Theory by Christine Miserandino explains energy levels in chronic illness.
How do you explain fibromyagia to others?
This article shared at Fibro Friday week 66
SOURCES:
Fibromyalgia Syndrome: An Overview of Pathophysiology, Diagnosis and Management
Fibromyalgia - Symptoms and causes - Mayo Clinic
