Navigating life with an invisible illness like fibromyalgia is full of challenges and obstacles. Fibromyalgia can affect many aspects of your life – from your physical well being to your relationships with family and friends (and everything in between). Learning how to live with these life-altering changes doesn’t come easily or quickly – but many have learned through experience how to make the most of life with fibromyalgia.
While doctors and medical practitioners offer valuable advice and guidance in treating chronic pain, sometimes the most helpful advice for actually living with fibromyalgia comes from those who have walked a mile in your shoes. Fellow sufferers can offer valuable insights on what to expect on a day to day basis and tips for handling the life-altering realities of fibromyalgia.
One of the great things about today’s world is the ease at which we can connect with people from across the world and share experiences and wisdom with each other online. The Internet can be a valuable resource for fibromyalgia sufferers looking for information, help and support as they seek to understand and live with this chronic illness.
We’ve searched out tips and advice from some of the best fibromyalgia and chronic illness blogs on the Internet. As chronic pain sufferers themselves, these women share valuable insights and perspectives that can help you in your struggles. Lets take a look at 4 traps these fellow fibromyalgia sufferers say you should avoid and what to do to avoid them:
The Explanation Trap
In her blog post 8 Things Spoonies Need to Know, blogger Julie Ryan of CountingMySpoons.com writes, “We often get stuck in a rut of feeling like we have to explain ourselves, or provide excuses for ourselves, our actions, our need to ‘pencil it in’ or cancel at the last minute. Constantly feeling that we need to explain ourselves only adds to the guilt that we shouldn’t be feeling anyway. It’s frustrating. There’s no reason that you have to provide an explanation for your actions (or lack of actions). If you can’t do something just say ‘no’. If someone wants to be difficult about it, walk away. If you feel comfortable enough with someone that you want to share the challenges your illness provides, do so. But, there’s no need to feel that you have to explain yourself every time you need to say no or set a limit.”
This is a common problem with invisible illnesses. Our first instinct is to explain ourselves to others who don’t understand how our illness is affecting the decisions we make or actions we take. While an explanation might be warranted in certain situations, in most cases it isn’t needed. As Julie suggests, explaining ourselves usually only adds to our guilt. Often times it inadvertently opens us up to more questions and scrutiny from individuals who – try as they might – will never understand where we’re coming from. Remember that as an adult – you don’t have to explain yourself to anyone unless the circumstances absolutely require it (i.e. with a boss or spouse).
The Guilt Trap
Do you experience feelings of guilt over things you have or haven’t done because of your fibromyalgia? If so, you’re not alone. Guilt is one of the most common emotions associated with those suffering from chronic pain.
There are a million things to feel guilty about. In her post How to Move Past Guilt with Chronic Illness, blogger Kelly Morgan Dempewolf, PhD explains, “I’ve talked a lot about the guilt that comes with having a chronic illness – guilt that I’m not able to do some things with my kids, guilt that my husband and kids have to pick up the slack for me around the house, guilt that I can’t volunteer and help others like I would like, guilt that I’m not doing as much and succeeding as much in my career with all the support and effort from others up to this point, guilt if I choose to do something for myself knowing that it means I won’t have energy for something else, and so on.”
She then goes on to explain that anytime she begins to feel guilty about something she is unable to do or over a burden she feels she is causing to others, she does the following:
1. “Remind myself that I did not ask for this disease, it is not of my own doing, it is not in my head, it is not an insignificant disease. It is very much real and impactful. This isn’t about taking on a “victim” mentality – it’s not something that was “done to me” nor is it something that I ever really think “why me?” about. This is simply a reminder that I am not the cause of my situation and limitations and therefore I should not feel guilty because of it.”
2. “Ask myself if I am making realistic decisions based on my current limitations. If I am not exaggerating my pain and fatigue, if I am not “milking it” then I should not feel guilty for making decisions based on physical limitations.”
Kelly nails it on the head with this one. Yes – guilt is a reality of chronic illnesses, we’re bound to feel it – but when we do we need to ask ourselves whether or not the guilt is justified. In most cases the guilt we feel is not fair to ourselves and as such we shouldn’t allow it to rule our emotions.
Our illness isn’t something we chose or even did something to cause. As long as we’re doing the best we can given the circumstances – there’s no real reason (or benefit, for that matter) to feel guilty.
The Comparison Trap
One of the other traps of suffering from a chronic illness is looking at other people’s problems through the lens of your own suffering. Often times, their suffering and complaining seems trivial when compared to your own. This can lead to feelings of resentment or anger towards family and friends.
One of our favorite chronic pain bloggers, Jenni Prokopy – a.k.a. the Chronic Babe- discusses this problem in her blog post Don’t Fall Into the Comparison Trap!
She writes, “Everyone experiences some level of suffering. Each of us is entitled to our own experience; it doesn’t help us to compare. Imagine how it would feel if you were complaining about YOUR symptoms to someone and they replied with: well at least you don’t have what I have, which is terminal! You would feel pretty awful, I’m guessing.”
While it’s tempting to feel resentment towards others for complaining about seemingly trivial problems or suffering – doing so can damage important relationships with others. The Chronic Babe notes that healthy relationships make room for both people to vent, that comparing our suffering reinforces negativity and that we can build stronger bonds through compassion.
The Stress Trap
Stress and chronic pain don’t get along very well. In fact, chronic stress can make many of your fibromyalgia symptoms worse. From causing pain flare-ups to increasing fatigue and exhaustion – stress can make life with a fibromyalgia even more difficult than it already is.
For that reason, finding positive outlets to relieve stress and making small changes to eliminate stress triggers can be hugely beneficial to fibromyalgia sufferers. In her blog post 10 Tips to Tame Your Stress Tigerblogger Sue Ingebretson offers helpful tips for eliminate daily stress triggers and finding positive forms of relief. Suggestions range from making a to-do list to using essential oils to promote calm.
Blogger Leah Tyler of the Chronicles of Fibromyalgia recommends meditation as a way to increase calm and serenity in an otherwise hectic life. She writes, “When my eyes flipped open this morning negative thoughts swirled around my brain. But I just couldn’t do it. I couldn’t face one more angry walk with the dogs. Another day full of frustrated glances at the rapidly diminishing hours left to complete all my responsibilities. And I absolutely, positively could not hand over another 24 hours to mentally bash the long list of people who perpetually piss me off.”
“Desperate to step out of this destructive cycle, I pulled up some guided meditation on Spotify and listened. Then I took my walk, which wasn’t angry, did yoga without getting mad about how late in the day it already was, and haven’t devoted a single minute to scathingly lecture everyone and their mother on the ridiculousness of their overwhelming expectations. No, the sickness in my soul isn’t cured, but my day has been amazingly peaceful.”
Regardless of the where you’re at in your journey with fibromyalgia, gleaning from the experience of others can give you priceless insights on how to deal with the mental and emotional toll the illness takes on your life.