Education is important. The more your loved ones know fibromyalgia, the more sympathetic they might be. For example, people with fibromyalgia may have problems with their memory (sometimes called fibro fog). If this is true for you, explain to your loved ones that you care about what they tell you.
But fibro fog is a common fibromyalgia problem. Whenever someone is struggling to understand or identify with what it must be like to live with fibromyalgia, I think to myself “you won’t get it until you get it.” In other words, you won’t completely understand what it’s like to live with fibromyalgia unless you’ve actually lived with fibromyalgia. Not that I would wish that upon anyone but unluckily the true extent of the illness and its force can only truly be understood by going through it.
Having fibromyalgia is usually a life-altering condition. But what happens when your family isn’t supportive? You might feel as if you can’t ask for the fibromyalgia support you so desperately need. Many of fibromyalgia sufferers often think with dismay that “nobody knows what they are going through.”
This is probably correct. The casual observer is unlikely to perceive the depth of their pain or fatigue through their behavior or appearance. And their friends try as they may, often feel confused by our seemingly strange array of complaints. Their presentation communicates the double message of “invisible illness” which they can look perfectly fine, but feel absolutely crummy.
Related – Also Read: Is fibromyalgia hereditary?
Be open with your loved ones
It’s complicated for someone who doesn’t have constant pain to visualize what living with fibromyalgia is like. . Educate your family about fibromyalgia with information from respected experts and institutions, such as the National Institute of Arthritis and Musculoskeletal and Skin Diseases.
Communication works both ways. You most likely don’t want to be seen as a “moaner.” Many fibromyalgia sufferers try to put on a happy face. But in order to let your loved ones help you, they need to know what kinds of things might make your symptoms worse.
The following list might help you get this conversation started. Tell your family members that fibromyalgia is like an energy crisis: You use more energy than your body can make. Another way to help people understand fibromyalgia pain is to tell them it’s like having the flu every day, including feeling achy, fatigued, and foggy. You need help just like anyone else who has an illness, so don’t shy away from asking.
The best way to ask for help is to be specific about what you need, such as asking someone to make dinner so you can have time to recharge. Rather than longing for understanding from others, the critical thing may be to understand you and be able to communicate that picture to others. How people will treat you is largely up to you and your behavior. The more you are able to recognize your own capabilities and limits, know your preferences, and are familiar with your audience, the better able you will be to do this.
As much as you may need help, your family members should be able to offer a helping hand without becoming exhausted themselves. Family members need to be able to say no when they don’t feel like serving. An unfortunate part of living with fibromyalgia is that you often won’t know if you’re capable of doing something ahead of time. 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. It is a real disease with very real symptoms. 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.
At work
Applying this at work may be the most complicated, where deadlines are likely to be less elastic. Of course jobs vary significantly in this regard. It is your call whether you want to share your disability with your employers. But either way, your boss or clients do not need to learn the details of your disability but just enough to accommodate you. You will have to engage in a careful balancing act between trying to achieve the work environment you need and not putting off people with fears that you are unable to do the job.
This makes knowing your abilities crucial. If you have a clear idea of what it would take for you to do a job, and what you may need in the form of special considerations, you can be straightforward. Not apologetic. Not demanding. In most situations where you need special assistance (helpful gadgets, rest breaks), your employer is legally obliged to accommodate you. When you are contented with your own needs, it becomes much easier to converse them, and without self mercy or bad emotion. Reveal information only when it becomes relevant.
If you are lacking a good chair: you can explain that you have back trouble and need a supportive chair. It is not necessary to explain fibromyalgia to everyone. If a line is too long for you to endure, you could ask for a manager and explain that you have a neuromuscular pain condition and need special kindness.
Select an explanation that fits the situation. Try to figure what you can comfortably ask of people. Always keep your requests simple and show lots of appreciation for any effort taken on your behalf. Also add your friends and family to fibromyalgia support group “Living with Fibromyalgia and Chronic Illness” and involve them in fibro related discussion which help them understand your illness.
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References:
- Understanding Fibromyalgia Pain—for the Whole Family via Fibro Center
- Fibromyalgia: Does Your Family ‘Get It?’ By Marie Suszynski via Everyday Health
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