Many times, individuals who have been diagnosed with fibromyalgia have difficulty adapting to their limitations. One of the most vital aspects of helping someone to cope with their fibromyalgia diagnosis is to really listen to what they have to say.
Typically, fibromyalgia is referred to as the “invisible disease” because it’s not something you can truly see- unless they express their pain. However, even though you can’t see it, it is very real and debilitating.
Many times, individuals suffering with this disorder are accused of “faking it” or it being “all in their head.”
It can take many years to finally get an official diagnosis, and it only comes after all other possibilities have been ruled out.
By simply taking some time to listen to an individual and validating their feelings by letting them know that you believe them and you’re there for them can really be a huge help.
Following are some tips on how to help a loved one cope when they’ve just received a diagnosis of fibromyalgia.
– First of all, as already mentioned, you must listen to and believe them. If you really love and care about them, why wouldn’t you believe them?
Why would you think they were lying to you about being in inexplicable or uncontrollable pain? This is even before they’ve gotten their diagnosis.
– Once they begin to realize and accept that there are some thing that they will simply no longer be able to do, grief will come. These things can be as simple as no longer being able to hold a knife to cut vegetables.
Grief is a process- it comes in stages. As their fibromyalgia begins to take over, the individual begins to notice that they are losing the ability to do things they enjoy- or maybe not so much- but they’re losing their independence.
– Give them the time- and space, if they need it- to grieve. Their priorities may be different and what you think may be important may not be.
Don’t expect them to be cherry and upbeat about their illness. In fact, since they don’t have their diagnosis yet, they are likely to be angry and frustrated that they’re having difficulties. Let them vent and be angry as much as they need to.
– Be there for them during the diagnosis process. The diagnosis process involves things other than x-rays, laboratory tests, etc.
The symptoms of fibromyalgia can mimic other illnesses, such as RA, lupus, and several others, so diagnosis is a process of elimination, which can take lots of time and be very tiring.
– Go with them to their appointments and help them explain their symptoms to the physician. The physician often doesn’t really listen to what the patient is saying, they focus more on the body language of the patient, their tone, and many other things that the patient may not even notice. Specialists usually read the symptoms that are within their specialty.
On the other hand, physicians will listen to caretakers, and healthy friends/family members of the patient, so by simply being there you will be able to help eliminate misdiagnoses.
Additionally, the pain and fatigue of fibromyalgia can keep the patient from being able to effectively communicate in an organized fashion.
However, since you’re not sick or in pain, you can present information to the physician in a more organized, coherent way.
– Take some time to research and learn about fibromyalgia so that you can help them to better deal with their condition.
Many times, individuals with fibromyalgia don’t understand their condition, which creates lots of doubts and anxieties.
Stress tends to cause the symptoms of fibromyalgia to flare, so doubts and anxiety will cause your loved one’s health to suffer.
– You should know that it is going to take some time and understanding to help your loved one deal with their limitations.
As time goes on, and they realize they’re not able to do things they once could, their self-worth may suffer. It is very important that you still take them out and spend time with them, but understand not to push them to do things they’re unable to.
First of all, you should understand that the fatigue could make them crabby like a toddler who hasn’t had a nap- so don’t pick an argument with your loved one about something they’re doing or not doing.
– Also, don’t ask them to remind you of things- they have enough to remember without having to remember your stuff too.
Finally, you should know that pain has the same effect on their mood as depression and pain medication will lighten their mood as fast as the right anti-depressant would for someone who is suffering from CFS.
So, if your loved one starts feeling down, miserable, or defeated, ask them if they’ve had their pain medication. Even if they are suffering from depression, the pain intensifies that, so the pills will most likely help.
– Stand back and allow them to do what they feel comfortable doing. Don’t fuss at them because you think they’re going to feel worse later on- let them learn their limitations on their own.
Also, don’t count on them to be able to do simple, routine tasks.
Often individuals with fibromyalgia will overestimate what they can do, and make plans but be unable to carry through with them. It may take years to figure out how to plan around fibromyalgia, and even then- you must always be able to be flexible.
– Don’t pressure your loved one into doing things. Remember that when you’re wanting them to do something for or with you, they’re having to think about whether they can even get out of bed, much less take a shower and get dressed.
The day of shopping you have planned may not be practical for them or there could be something they’d prefer to do with the limited amounts of energy they have.
So, there are lots of things you can do to help your loved one cope with a diagnosis of fibromyalgia. Basically, just be a friend. Be their sounding board. Give them advice- when asked, don’t offer it unsolicited.