Hello fellow members,
I am sorry to read that some of you have had some bad experiences explaining your condition to others and have come up against lack of awareness, understanding but most of all no sympathy/empathy. Please know you are not the only one and I wonder how many living with Fibro has had similiar situations.
So due to the recent poll I wanted to write a post using excerpts from articles which may be of interest and they may provide some help/advise
Fibromyalgia: Does Your Family 'Get It?' (2013) By Marie Suszynski | Medically reviewed by Niya Jones, MD, MPH (please google)
How to Help Your Family Understand
Gaining support from family members who just don't "get it" or aren't as supportive as they could be starts with being a good communicator. It's difficult for someone who doesn't have chronic pain to imagine what living with fibromyalgia is like.
Here's how you might approach a conversation about what you're going through.
****Dispel their doubts. Educate your family about fibromyalgia with information from respected experts and institutions, such as the National Institute of Arthritis and Musculoskeletal and Skin Diseases (which states that more than 5 million people in the United States live with the syndrome).
There is approximately 2 million people living with Fibro possibly up to 2.7 million. Please know you can get information from us, FibroAction UK Charity which may be useful and how to contact us is at the end of the post.
****Explain that fibro is like blowing a fuse. Tell your family members that fibromyalgia is like an energy crisis: You use more energy than your body can make, Dr. Teitelbaum says. "You've gotten to the point where you've blown a fuse," he adds.
Let family members know, however, that you're doing what you can to beat fibromyalgia pain and to make yourself feel better. Explain about the need to listen to your body. An unfortunate part of living with fibromyalgia is that you often won't know if you're capable of doing something ahead of time, Teitelbaum says. It's common for people to have to wait until the last minute before they know if they can participate in an activity or if they need help. Explain to your family that this is part of life for people who live with fibromyalgia, but that you'll do everything you can on the days that you feel up to it.
Positivity in pain #fibromyalgia and #relationships by Jennifer Corter (2014 (please google)
Things to thing about:
a) Blind to it: Sometimes family and friends will cope by simply pretending there is nothing wrong with you, as if by that simple denial it will go away or become less of an issue. (Please read more in article)
b) Acknowledgement: There are times with chronic pain we feel our partner doesn’t get how difficult it is for us to function and do daily activities. (Please read more in article)
c) The retreat: Over a long term chronic illness friendships can be difficult to maintain. Friendships are a give and take and when a friend feels they are always the one makings plans and you are always the one postponing or cancelling it can be difficult. (Please read more in article)
d) Owning emotions: Family members, friends and loved ones can have a lot of emotions to deal with of their own. Emotions they have a right to. It can be difficult for us to deal with these at times. Sometimes it can be a simple matter of acknowledgment. (Please read more in article)
Fibromyalgia may not only difficult for you but also for those around you too and I posted this article a while ago as it may help, link below;
A few things that may help with understanding & education;
There is also an article called 'A letter to the healthy world from the land of Chronic Pain & Fatigue' here too;
Use FibroAction information to explain to your family
Don't forget you can always download & print our evidence based factsheets if this helps explain Fibro to anyone, find link below;
Our recent poll - How do you explain Fibromyalgia to people outside of your family when they ask about your health?
Regarding the poll it is good to read some people on occasion are starting to know what it is, which saves having to explain and it is encouraging news awareness may be slowly getting better.
Anyone who would like posters and/or flyers to help spread awareness and/or flyers to put up at work, local hospital, doctors, library, CAB etc please email us using firstname.lastname@example.org
Hope this helps - Keep a look out for Part 2, 3 & 4
Please Note: This is written without my FibroAction hat on, just to provide any articles with good information that may help (note not research articles
Part 2 - Fibro, family, friends & everyone you may know - Communication
Part 3 - Fibro & everyone else - Awareness & how you can explain (if you want to that is)
Part 4 - Fibro & Toxic Relationships.