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
I explain it to others as chronic pain with many other symptoms that vary day to day. It does depend on the person I'm talking to whether I give more information or not.
ReplyDeleteThis is a great and simple explanation - thank you
DeleteI used to do the first day of the very bad flu thing, but as time went on I realized that it doesn't come close. The other morning I had a bout of clarity and came up with something better. Of course, I forgot exactly what I said by mid day, which also proves the point, widespread pain, don't cover it. Insomnia, don't cover it. Even the flu equation, don't really cover it. Small blurbs just don't give it justice. May 12 is Awareness day. In an effort to explain it to the butthead "professionals" here that know nothing, I came up with this: https://docs.google.com/document/d/1sswXvpO2cK4Mdigh6rU8NeyspBOkSaIo-rk9ML3r_gU/edit?usp=sharing Note: the memes are not my own, gathered from years in Fibro groups and such, but...feel free to share, I have it set to public.
ReplyDeleteThanks so much Chelle Belle, the DOC is great and has lots of good information about what it is really like to have Fibromyalgia
DeleteI must admit that I almost tried all these explanations but it doesn't seem to work... questioning my mental health seemed more realistic than me having an unexplained chronic illness at 26 yo. It made me question myself more than once and ended up having a blog about it so I can come to terms with it! There is no doubt that people need to learn more about the condition so they can stop considering us maginary patients
ReplyDeleteHi Kooki, sorry to hear that people have questioned your mental health rather than believing you. I also was sent to a psychologist for depression before I was diagnosed even though I said the depression was caused by not knowing what was wrong with me and nobody believing me for many years. You are right there needs to be more awareness about Fibromyalgia as we are not imagining this.
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