"On top of all the pain, brain fog, and discomfort of fibromyalgia, we're also aware our condition affects the happiness of our nearest and dearest. And it makes us feel like a burden.
"If you're a caregiver, there's a good chance your loved one feels like this a lot."
Read Rob Obey's tips on how best to help your loved one cope with fibromyalgia – emotionally and physically.
Fibromyalgia is an unpredictable medical condition. One day you'll feel fine. The next, you'll struggle to lift your head off the pillow. On these bad days, those of us living with fibro need all the help we can get.
Personally, I'm too proud to say I have caregiving needs on bad days. Instead, I say, “I need a little support." Wording it this way makes me feel less like I’m an inconvenience who depends on others.
Related: How Fibromyalgia Affects My Daily Routine
And helping others with fibro feel like people, not just a load to be "managed", is what this article is all about. Equally, if you care for someone with fibromyalgia, this piece may help you:
- Understand that fibromyalgia is a dynamic condition that can change from day to day - sometimes even hour to hour.
- Find out if and when your loved one needs your help
- Work as a team to make fibromyalgia manageable for both of you
- Know the most important thing you can do to help your loved one - even when you are feeling helpless
1. Try to understand the disease
Supporting a loved one with fibro can be challenging. Especially if you don't understand the condition. And seeing as some doctors don't fully understand it, what chance do us non-medical folk have?
When I say "try to understand fibromyalgia", I'm not saying you need to understand everything about the physiology of the disease. Leave that to the medical professionals.
Instead, try to understand how it affects your loved one - both physically and emotionally.
Here are some tips for doing just that:
- Have regular conversations with your loved one. Checking in without piling on any pressure may help them open up to you.
- Read, read, and read some more about the condition. But make sure you choose reputable sources – fibromyalgia patient organisations are excellent sources for this type of content.
- Remember, fibro can look different for everyone, so there aren't many hard and fast rules. Keep this in mind while you're swotting up!
2. Learn to recognise fibro-flares
As mentioned, fibromyalgia symptoms can differ from person to person. Flares can be sudden and unexpected, so predicting episodes in advance can be tricky.
However, many subtle things may trigger a flare-up. When your loved one has a painful episode, sit with them and figure out what they'd done or encountered the days before that may have led to the pain. Many illnesses - like asthma, for example - have triggers, and fibromyalgia isn't an exception.
Over time, and with careful note-taking, both of you may be able to 1) identify what triggers a flare-up and 2) decide what steps you can take to avoid these triggers in the future.
There is tons of information online if you're both in the dark about your or your loved one's fibro triggers. Remember, triggers are as personal as an individual's symptoms, so don't expect all examples to strike gold. However, having possibilities to watch out for will provide enough of a framework to be getting on with.
Take the opportunity to read about the presentation of fibro-flares, too. Sometimes an episode will include pain, stiffness, sensitivity to light, and more. Other times, a flare won't be physically as uncomfortable, but you or they could suffer from a severe bought of brain fog.
Related: Brain Fog - A Frustrating Symptom of Fibromyalgia
Both of you should combine this research with your or your loved one's symptoms. With a bit of studying, you'll have a much better chance of identifying a flare-up when you see or feel it.
3. Manage fibromyalgia as a team
I can tell you that living with fibro is often a lonely affair.
Because fibromyalgia is relentless, it gets to the point where you stop mentioning symptoms, difficulties, or flare-ups. Instead, you learn to suffer in silence. You don't want to look like you're moaning all the time. So, you keep it to yourself until the pain becomes so terrible you can't remain silent.
Hey, no one will give you a certificate for being noble or a brave little soldier. I understand why you don't want to be the one who complains the entire time. But you have the right to care, compassion, and medical attention as everybody else. You are NOT a burden - you're doing the best you can with what you've got.
If you have a loved one who lives with fibro, remind them that:
- It's okay to share how they feel
- You are there to help them – and happy to do so
- They don’t have to carry all the worries alone
4. Emotional support is as important as physical support
When we think about caring for someone, we generally think about physically helping them with various daily activities. Things like cooking, cleaning, washing, dressing, and helping with toilet needs are all considered caregiving support.
And yes – people with fibromyalgia who are experiencing extreme flares will need this assistance to this level.
Related: 3 Tips for Living and Coping with Fibromyalgia
Although, more often than not, your loved one will try to manage - even if they do these daily tasks less than perfectly.
But, what a person with fibromyalgia needs beyond anything is emotional support. Especially when t comes to feelings of blame and guilt. Trust me on this: both can haunt us.
4a. The “blame game”
Fibromyalgia will come with many challenges for everyone involved. I know you don't want to see your loved one go through this, and I also understand how draining it is to give round-the-clock care and emotional support. Family caregivers aren't bottomless wells of cheerful outlooks, kind words, and non-stop responsibility.
Suddenly being in charge of someone else's emotional and physical well-being is exhausting, stressful, and demanding. This is probably not how you imagined life would turn out.
But don’t blame your loved one. This is not something they chose, and it's not their fault.
And, to let you into a little secret, chances are your loved one is already blaming themselves.
Fibromyalgia isn’t self-inflicted, but many of us feel responsible for our condition. Most of us are also hyper-aware of how much it impacts our loved ones and caregivers, and we feel responsible for that, too.
5a. Managing guilt
On top of all the pain, brain fog, and discomfort of fibromyalgia, we're also aware our condition affects the happiness of our nearest and dearest. And it makes us feel like a burden.
- Imagine how it feels when your intimate relationships come to a grinding halt.
- Imagine the stress of being in constant fear of your relationship breaking down.
- Imagine how depressing it is to carry these feelings around with you 24/7.
If you're a caregiver, there's a good chance your loved one feels some or all of this.
You won't be able to take these thoughts away, no matter how hard you try.
But you can be there for your loved one here and now. Let them know you can and will help. Understand that fibromyalgia doesn't define a person; it is simply part of them.
Explain that you're both strongest when you work together. That your loved one with fibromyalgia won't have to weather the storm alone. How you'll both learn to live with fibromyalgia and won't love the other any less.
Living with fibromyalgia can be horrible. It can take away a person’s independence, confidence, and mental well-being. In extreme cases, it can lead to social isolation and destroy relationships.
All of this is on top of living with the daily pain of fibro.
However, a supportive loved one can make the journey much more bearable.
NPS-IE-NP-00434 June 2022