The Beatles once said that people can get by with a little help from their friends (and family). Unfortunately, many people do not have the support circles they need. This lack of support can make dealing with fibromyalgia especially difficult.
There is good news, though, for people who find their family and friends to be less than understanding: Most people are unsupportive not because they don’t want to be, but because they don’t understand fibromyalgia. It can be incredibly painful emotionally when someone feels intense physical pain and no one “gets” it. The isolation can take a toll on one’s mental and physical health, thus worsening their condition. Don’t worry, though! There are plenty of ways to get help from your family and friends!
Lack of support from family and friends can make it difficult to deal with fibromyalgia. Many people do not understand fibromyalgia symptoms and so are less than helpful. When a person feels intense physical pain and no one understands it, it can cause severe emotional distress. The person may feel isolated and the condition may worsen because of it. However, there are many ways you can get help from your family and friends.
Explaining the Pain
When you tell your family and friends that you’re in pain, they understand only when they have experienced similar discomfort. For instance, if you have a migraine (which is a symptom of fibromyalgia) and you share it with a family member who has never had one, they may think that a headache and a migraine are the same thing. This can cause stressful and negative interactions, so you should communicate with your loved one at a level that they can understand. Sometimes you may find difficult to find the words to make them understand. The following are a few ways to approach such situations:
Education: You can explain to your family and friends about fibromyalgia. Although it will be time consuming, it would also make things easier for you. You can use visual aids to help represent your research, along with charts and graphs. Popular website like YouTube can also be good resources to utilize.
Use comparisons: When dealing with fibromyalgia, use comparisons to get your point across. You can tell people, for example, that it feels like you constantly have a fever and feel fatigued, foggy, and achy. You can explain that in fibromyalgia, you use more energy than your body produces.
Be proactive: You should introduce the acronym SHINE to your family members. It stands for:
Sleep — Get adequate amounts of sleep.
Hormones — Get the necessary hormone treatments.
Immunity/Infections — Be proactive about infections and get them treated promptly.
Nutrition — Take vitamin supplements and be nutritious about your food choices.
Exercise — Get active to the best of your ability.
Advance plans: With fibromyalgia, it is often difficult to make plans in advance. However, most people are happy to work with you once you explain to them that some days you may feel sick. Listening to your body carefully is very important — after all, your family doesn’t want you to overexert yourself. Reassure them that you’ll have fun with them once you feel better.
Ask for help: Just because people can’t tell that you’re sick does not mean they’ll refuse to help you. At the same time, try not to overburden one person again and again. You can either ask them for help directly or ask for help to find a care aid for you.
Respect boundaries: Understand that they, too, have their own responsibilities and be appreciative of the help they offer. Be gracious to them for their care since caregiving is known to be stressful and has an extremely high burn-out rate.
Keep the lines of communication open: You should feel free to talk to them about your condition. Have conversations with specific people whom you feel you can trust.
While you deal with chronic pain, your family and friends may not. Because they do not deal with chronic pain, when they hear that you are in pain, they equate it with when they are in pain. So, for example, if you have chronic headaches, like migraines (which up to 40% of people with fibromyalgia do), and you complain to your sister who has never had a migraine in her life, she thinks your migraine pain and the headaches she occasionally gets are the same. This miscommunication can often result in negative and stressful interactions. This is why it is so important to be able to communicate with your loved ones on a level they are able to understand.
Sometimes the feeling of being unheard by your loved ones is so painful, you have trouble formulating the words you want to say. Here are some clear ways to approach these potentially difficult conversations:
People will not change their attitudes and ideas unless properly educated. It can be frustrating to educate people on fibromyalgia, but taking the time and effort to explain it will make your life much easier later.
One of the best ways to make a point is by using plenty of concrete evidence. Which sounds more impactful?:
A. A lot of people have fibromyalgia.
B. More than 5 million people in the United States have fibromyalgia.
Obviously B sounds way better! Being able to show specific numbers not only sounds more convincing, but also helps to contextualize how real and widespread fibromyalgia syndrome is.
Another way that people respond to information is through visual aids. Finding charts and graphs to further represent your research will help your family get the full impact. You can also search YouTube or similar sites for videos about fibromyalgia. Often you can find videos with interviews from people who live with fibromyalgia. Hearing your sentiments echoed may help your family further understand. If you feel comfortable, post some videos to Facebook or other social media sites to let all of your social media followers understand fibromyalgia better.
Think back to your high school Language Arts class when you went over similes and metaphors. We learned that authors use them because it helps to convey the precise point, or sight, or feeling to an audience that would otherwise be hard to do. When Humber Humbert in Nabokov’s Lolita writes “Elderly American ladies leaning on their canes listed towards me like towers of Pisa,” because that image, that feeling is very different than the one you would get if he wrote “Elderly American ladies leaned on their canes listed towards me.”
Similarly, saying that you are in pain or that you have fibromyalgia is not going to be specific enough for some people. You need to think like an author, and use a comparison to get your point across. (And you thought you would never use 10th grade English class again!) You can tell people that it feels a bit like having the flu every single day, including feeling fatigued, achy, and foggy.
For the less empathetic of your family members, maybe an electrician’s example will work. Dr. Jacob Teitelbaum, MD, who is the medical director of the Fibromyalgia and Fatigue Centers, Inc., suggests to explain to family members that with fibromyalgia, “you’ve gotten to the point where you’ve blown a fuse.” In other words, there is a shortage. You use more energy than your body is able to make.
Now that the heavy part of the conversation is over, you can tell your family members about how hard you are working to beat fibromyalgia pain.
Dr. Teitelbaum uses the acronym SHINE, which you can share with your family. SHINE means: getting enough sleep, getting whatever hormone treatment your body may need, being proactive about infections and getting them treated as soon as possible, taking nutrition supplements and being nutritious in your food choices, and exercising to the best of your abilities. Introducing this acronym to your family and explaining how you are working on your treatment and self-care allows for them to feel involved. You being positive and confident about your treatment allows you to set the tone and take control of the situation.
Fibromyalgia syndrome is a lot of things, but convenient is not one of them. Unfortunately, this means you probably won’t know in advance if you are going to feel up to do what you have planned. This makes making plans in advance very difficult. How do you respond appropriately to a wedding RSVP? Once you explain to your family and friends that living with fibromyalgia may mean that you may or may not be sick on the day of something important. Most of the time, people are happy to work with you. After all, people are understanding when someone is unable to take off at work or if someone gets a fever the night before and misses an event. You not feeling well is a valid reason to stay home. Your family and friends love you and do not want you to overexert yourself. It is so important that you are listening to your body carefully. Pushing yourself will only result in you feeling worse for a longer amount of time. No one knows what’s best for you better than you (except maybe your doctor), so if you feel like you shouldn’t go to that office party, then don’t.
Make sure you also tell them that despite the wrench fibromyalgia throws into your social calendar, you will make sure to prioritize having fun with them on days when you do feel up to it.
Now that you have explained fibromyalgia to your family, it is time to think about what you can do to keep the lines of communication open.
If you had a broken leg, you would have no qualms with someone offering to help you out so you don’t have to climb up and down the stairs. Just because your illness isn’t visible doesn’t mean people won’t help you. Your family and friends love you and want to help. It is understandable if you do not want to overwork them, so try not to ask the same people over and over again. If you really do not feel comfortable asking them for help, maybe you can ask them to help you find a care aid to help you when you are not feeling well.
Your friends and family all want you to get better, but it is also important to remember that they have their own lives and responsibilities. Your friends and family need to feel like they are allowed to say no.
If your friends and family do help you, make sure that they know that you are appreciative. Say thank you and be gracious. Ask them about themselves and offer to pay for gas sometimes. Nine times out of ten, your family member won’t let you give them money, but people like to feel appreciated. This will help to prevent any tension that sometimes builds when you have to rely on family and friends for certain things. In caregiving industries (therapists, teachers, nurses, etc.), there is an extremely high burn out rate because caregiving is very stressful. You want to make sure that no one feels burned out.
Now you are ready to talk to your family and friends about fibromyalgia syndrome. If you can, set up a time to have this conversation with a person in particular. Practice what you want to say out loud so you can get your thoughts in order. Hopefully, approaching the conversation this way will help you and your loved one get on the same page!
