A diagnosis of Fibromyalgia can be difficult not only for the patient, but for their loved ones as well. A diagnosis may be expected, or it could be out of the blue, and in many ways, your Fibromyalgic loved one may rely on your support to get through this difficult time, and throughout their life with the illness. It is important to note that due to the wide variety of experiences with this illness, and due to everyone’s individuality, different people may need different levels and types of support, so the main thing you can do to be supportive is to ask how you can help and to be there for your loved ones in the ways they request. However, here are a few pointers:
For the recently diagnosed…
The golden rule is always ask how you can be of assistance.
Some may want to discuss it and will be open to help, others may cope by ignoring the diagnosis, or trying to continue with life as normal. Any option is valid as they come to terms with their diagnosis, and it is important to respect the wishes of your loved one.
A common complaint from people with Fibromyalgia is that as soon as they received their diagnosis, people were quick to jump to providing well-intentioned, but ultimately unhelpful advice.
A new diagnosis can be overwhelming, and there are multiple aspects of treatment and management to be considered, all with moving parts that affect each other. Simply following a doctor’s initial management may take a lot of adjusting to, and excessive advice can further overwhelm your loved one.
While some basics like getting good sleep, eating well, reducing stress hold true- people with Fibromyalgia have often tried many of these strategies, and need more specialised support for these to be effective.
On the other hand, some may welcome a team ready to get stuck-in to support them as they adjust. Hence the golden rule- ask.
Ask how you can help
Everyone is different, so as always, your best bet is to directly ask, “How can I best support you?”.
Patience & Understanding
Try to be understanding if your loved one has to change plans often. Flares can come and go with little warning, and symptoms can be fairly unpredictable or dependent on things that may seem minor, like the weather, or how much sleep they got the night before. The same may go for completing other responsibilities, such as household chores or other important activities.
Make socialising more accessible
Try to organise minimal effort meetings. Find out if it’s easier for you to come to their home or to go to a more handy meeting place, as going out can be very draining for people with Fibromyalgia.
Try to meet in warm places and avoid the cold. Fibromyalgics tend to have poor circulation, especially in hands and feet, so this, along with other symptoms can flare up in cold weather or outdoors late at night. Find out if this is something that affects your loved one and manage accordingly.
To some people, many of the hallmarks of Fibromyalgia are perceived as laziness or disorganisation. Often, it is simply the case that they do not have the energy or strength to fit as much into a day as everyone else. If their house is a mess or they are unable to keep up with fitness, be understanding rather than judgemental, and offer help if possible.
Try not to take irritability or emotions personally. Fibromyalgia often goes hand in hand with anxiety, depression, and a range of mental health struggles. Aside from this, being in constant pain and fatigue, and adjusting to life with Fibromyalgia can be distressing in its own right.
This can make for difficulty communicating ideas clearly; challenges processing complex or emotionally heightened situations and anxiety, and can be a source of conflict, oftentimes with people perceiving Fibromyalgics as “irrational”. While healthy communication is a foundation of any kind of relationship, and there is no excuse for abusive behaviour, try your best to understand where your loved one is coming from. Particularly try not to push ideas concerning their Fibromyalgia management if they are opposed. Even if their reasoning seems irrational for you, small things can make life more difficult for them.
Let them vent
Especially as Fibromyalgia can exclude patients from many social situations due to pain or fatigue, social interactions can wane. Though it may be frustrating to constantly hear how hard it was for them to do something, or how their life has changed since developing the condition, remember that just listening can be a huge help for someone with Fibromyalgia. Sometimes simply getting it off the chest can alleviate significant stress and improve quality of life on its own.