Welcome to Fibro Fridays Replay! Each Friday we will have a live video feed on our Facebook page to address questions, comments, concerns and suggestions that we receive each week. Topics include parenting, treatments, books, products, and more about fibromyalgia. This replay post will include the video and links to expand on those topics. I also included links to where these products can be purchased, Facebook groups, Pinterest pages, and other website links.
Do our significant others understand fibro? Tips and resources for understanding. #FibroFridaysLive #fibromyalgia Click To Tweet
Here is the video playback with the links to the topics discussed below:
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Summary of our week
- We lost our youngest daughter this past week for an hour. It was the scariest moment!!
- I got two himalayan pink salt lamps from a neighbor. The lamps are big chunks of himalayan pink salt. It is a natural ionizer and helps with sinus issues, depression, tension, sleeplessness, and more.
- Our kids got awards including perfect attendance, A/B honor roll, and Jammin’ Jaguar!
- We are gearing up for upcoming events to spread knowledge about fibro: For all current events for May 2017, please visit my events page. If you know of any event, please contact me.
- If you’d like to schedule a chat via video or phone with me to discuss your journey with fibromyalgia (for the purpose of just talking for release or for advice), please contact me. This is a free service*.
*Disclaimer: I am not a healthcare professional and can only lend my experience and knowledge. As always, please discuss your treatment with your physician.
My Weekly Reading
Please connect with me on Goodreads https://www.goodreads.com/
- A Lucky Child: A memoir of a child surviving the Holocaust by Thomas Buergenthal (links to my review of the book and why I give it 5 out of 5 stars)
- The FibroManual by Dr. Liptan (details below)
Do our significant others understand fibromyalgia?
This is a question that gets asked quite often in the fibro community, and the question is not limited to our significant others. We not only wonder if our friends and family understand it, but do outsiders understand it, too? I use the term ‘outsiders’ in a way that means they do not have a close connection to fibro.
More than likely, the answer is no. It’s human nature to not fully understand a concept, situation, issue, or illness until we are the ones experiencing it first hand. Feeling the emotions, consequences (negative and positive), and daily life of a chronic illness is limited depending on your viewpoint.
And the same is true for the person living with fibro. We, the ones with fibro, do not know, in most cases, what it is like to care for someone with fibro. What does the caregiver experience? What are their emotions? What is is like to care for someone that is not always able to care for themselves? What are the feelings involved with it?
How do we get our significant other to understand fibro?
This question was asked by a fibro parent from our Fibro Parenting Facebook group. It is a concerning question that is full of different perspectives and angles. I do not have a single answer, but I do have some insights from my experience. I also had feedback and advice from others which is also discussed in this article and video.
Unfortunately, your significant other will not fully understand fibro. My husband and I have been living with fibro for over a decade, but I was not diagnosed until four years ago. Even after living with the illness for six years prior to diagnosis and then receiving a confirmed diagnosis, it was hard for me to explain what it was. I don’t remember how I told him, but I know it was not a one-time conversation.
The discussion about fibromyalgia is an ongoing one which is discussed over many days, months or – in our case – years. There’s always something to be learned which is why it’s ongoing. It’s not a scheduled talk or planned. It comes up in casual conversation about upcoming plans, as I read a new article, discover new tricks to relieve symptoms, or whatever else it may be.
Will they ever truly understand? In many cases, no, but there are ways to open the door to lead to some understanding.
Patience First
First, I want to stress patience and understanding from the person living with fibromyalgia. It is a process to get someone to understand fibro especially to the person not living with the illness. Do not get angry with your spouse for not understanding. It is a learning process for both parties. Saying phrases such as “welcome to my world” or “now you know what I go through” or “you just don’t understand” is the foundation of a wall between you and the other person. Just as you needed time to process your diagnosis, your significant other needs time, too. Be patient as you both become acclimated to fibromyalgia.
Ways to start on the road to understanding
- Accept that it’s going to be hard. Living with fibromyalgia is hard. Having someone else understand your pain and suffering is even harder. Don’t force it and don’t give up. Address it one issue at a time and take it slow. If either party becomes overwhelmed or tension starts to set in, call a timeout for the moment. Come back to the issue at another time.
- Don’t misinterpret their quietness for not wanting to understand. Maybe your significant other doesn’t know how to resolve or help your situation with fibromyalgia, so they react by doing or saying nothing. Maybe them not being able to help you makes them feel less-than or inadequate or helpless or any other type of negative.
- Everyone processes information differently. The way you receive information is not the way some other person will process it. Try different ways to present or address the topic of fibro.
- Don’t make the other person feel guilty for their action or inactions. Unless they are putting you down or being negative to you about your illness, do not make them feel guilty for not understanding it.
- Try cooking a meal or making a smoothie that is beneficial to fibro. During or after the meal, mention how the certain foods lessen your symptoms. Be specific about it. For example, if you make this amazing inflammatory busting pineapple smoothie, say that pineapples help fight the inflammation in the joints alleviating some of your painful joints.
- Find a calming or relaxation technique that you can do together. Afterwards, explain how that technique helps relieve stress which lessens your pain. Let them know you appreciate the togetherness.
- Share articles or other small bits of information you have on fibro. Share funny stories of fibro affects such as fibro fog.
- Don’t minimize the other person’s pain by allowing them to compare their situation to yours. When your spouse or significant other addresses their issues, don’t allow them to compare it to your illness. Expound on their feelings and how they are processing their own feelings.
- Watch a film about chronic pain, such as Cake with Jennifer Aniston, or another film that is similar to chronic illness. There is a documentary being produced called Invisible: The Film, and it will explore the world of fibromyalgia. Visit their site for more information.
- Communicate your feelings. Even if your significant other can’t understand your illness, they should still know your feelings. Always start with the positive and gently lead into any negative feelings you may be having. Avoid the word ‘you’ and if you notice the conversation shift to being tense or argumentative or defensive, table the conversation and come back to it later. Remember, this is an ongoing discussion.
- Show them how they can help. Sometimes our significant other may not know they are capable of helping. Give them some actions they can take to be helpful to you. For example, if you know they can cook an amazing dish, ask if they are able to cook it that week, in advance. Or maybe you need help with the laundry. Ask a few days ahead of time if they can help throw the clothes in the dryer and help you put it away once it’s dry. Be specific and include action items.
- Give praise when they do help. Even if it means no big deal to them, fibro thrivers love the help no matter how small. Let the other person know how that action made you feel in a positive way. For example, after they have made dinner or put away clean laundry, tell them how it saved the strain on your back or pressure on your feet. Be praising, but don’t sound phony or overwhelming.
- Find a common ground. There is a common ground with everyone relationship. However that commonality comes about, use it. For example, if the other person becomes ill and has body aches, show empathy. Don’t say “yeah, welcome to my world, I feel it all the time”. Instead, let them know you understand how they are feeling and show them the ways you get relief.
- Include the other person in your plans. Whenever I go out, rather it’s the store, a trip, or an outing, there are plans to be made leading up to departure and being out. There’s a plan a, b, AND c – include your significant other in those plans and why you have those plans and how they link to fibro.
Resources for support
https://thezebramom.wordpress.com/2017/01/23/a-letter-to-my-fellow-chronic-illness-sufferers/
https://menwithfibromyalgia.com/myhusbandhasfibromyalgia/
https://morespoons.com/howiexplainedibd/
https://zebrawrites.com/2016/09/29/how-to-be-an-ally-to-someone-with-an-invisible-illness/
https://bclearwriting.com/the-1-surprising-thing-to-do-when-people-dont-understand-your-chronic-illness/
https://livinggraceblog.com/marriage-in-chronic-illness/
Tami Stackelhouse, Fibromyalgia Life Coach
“Tami Stackelhouse encourages hope and healing as a coach, author, speaker, and patient advocate. She is the founder of the International Fibromyalgia Coaching Institute. A fibromyalgia patient herself, Tami has gone from disabled to thriving. Her compassion, gentle support, and fun coaching style help women with fibromyalgia take back control of their lives.
Tami lives in the suburbs of Portland, with her husband, Scott, and their three cats: Sam, Jesse, and Sniglets. On sunny days, you’ll find her on the back of Scott’s Harley. When it’s raining, she will be by the fire, reading a good book, and rubbing Sam’s big Belly of Happiness and Joy.
Healthline named Tami’s blog as one of the 15 Best Fibromyalgia Blogs of 2015 for its quality and contribution to the fibromyalgia community. Tami has been an instructor, presenter, and writer for organizations such as the National Fibromyalgia & Chronic Pain Association, The Frida Center for Fibromyalgia, Oregon Fibromyalgia Information Foundation, and Molly’s Fund Fighting Lupus. She is a graduate of the Leaders Against Pain Scholarship Training sponsored by the National Fibromyalgia & Chronic Pain Association (NFMCPA), and a member of the Leaders Against Pain Action Network.
As a patient advocate, Tami began working with the NFMCPA and Oregon doctors in 2013 to petition policymakers to move fibromyalgia onto the Prioritized List of conditions covered by Medicaid reimbursement. As of 2016, that battle is still on-going.”
– Amazon author bio
Click here to visit Tami’s site.
Click here to purchase Tami’s book from Amazon.
Fibromyalgia Online Course
While looking for courses through hospitals, I came across a few courses that are online. Out of curiosity, I signed up for a paid fibro course through the website CFIDS & Fibromyalgia Self-Help. You take the introductory course which is seven weeks in a group of 15-18 people.
My class starts in early April, and I’ll let you know how it goes and if it’s worth the investment. That will be sometime in June or so.
For more information, please visit:
https://www.cfidsselfhelp.org/online-courses/introductory-self-help-course
Articles regarding CBD Oil
- CBD Oil and Fibromyalgia by Donna at Fed Up with Fatigue: This article also links to the following articles (scroll to the bottom of the CBD Oil article to see these):
- How to use medical marijuana without getting high
- Could fibromyalgia be caused by an endocannabinoid deficiency?
- My first medical marijuana haul
Facebook groups
- Fibromyalgia groups
The FibroManual by Dr. Liptan
“The most up-to-date, comprehensive treatment guide to fibromyalgia, by a renowned physician who herself has the condition
If you suffer from fibromyalgia and are struggling to get help from your doctor, you’re far from alone. Ten million Americans experience the widespread muscle pain, profound fatigue, and fuzzy brain (“fibrofog”) that have long frustrated both patients and doctors. In this unique resource, Ginevra Liptan, M.D., shares a cutting-edge new approach that goes far beyond mainstream medical knowledge to produce dramatic symptom improvement.
Dr. Liptan’s program incorporates clinically proven therapies from both alternative and conventional medicine, along with the latest research on experimental options like medical marijuana. Since many health care providers have limited fibromyalgia expertise, The FibroManual includes a thoroughly sourced “health care provider guide” that enables readers to help their doctors help them.
Alleviate fibromyalgia symptoms in four simple steps (Rest, Repair, Rebalance, and Reduce) and you will
- restore deep, restful sleep
- achieve long-lasting pain relief
- optimize hormone and energy balance
- reduce fatigue
This accessible and empowering resource provides essential information about understanding and treating fibromyalgia from a physician who, as both patient and provider, understands the illness from the inside.”
– Amazon website book description
Click here to purchase on Amazon.
Join the Facebook group discussion.
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