I’ve written about fibromyalgia before, you can find them on the website talking about fibromyalgia from a patient’s point of view (mine), and the questions I am most frequently asked about it.
I never used to be so open about my diagnosis for several reasons:
- I found it hard to explain to other people
- I was ashamed to be carrying what felt like a heavy burden
- I had spent years trying to convince doctors my symptoms were real and I’d run out of energy to convince others of my challenges
- I didn’t want to be seen differently
I got my diagnosis 10 years ago but my symptoms started (mildly) when I was 6 years old. I have spent the last decade learning everything I can about the condition and my body since then to give me the best ability to live without limitations.
There are still limitations, I have made permenant lifestyle adjustments to reduce the impact of these, but it is second nature now. I won’t bore you with the details as I’ve gone through a lot of that in the previous blogs (hint hint, go and read them!)
What I will explain is the two main attitudes I encounter when people learn about my fibromyalgia and how I navigate the conversation, so you can glide through that conversation with the same ease as I do. This can also apply for those of you with other chronic pain, or conditions like ME/CFS.
Attitude #1: Toxic Positivity
I have encountered toxic positivity from people who do not have fibromyalgia, people who want to help people with fibromyalgia, and people who have fibromyalgia and are hiding the darker side of their experience. Most of the time it stems from either:
- A lack of understanding with a desire to help,
- A desire to make money under the disguise of help, or;
- A desire to hide how difficult a chronic condition can be
There are obviously other reasons and scenarios, I’m generalising into ‘most common’ and I have met lots of people who just wanted to learn more, offer advice or be supportive. So let’s take a moment to appreciate the people who radiate nothing but support and a healthy curiosity to educate themselves!
How Toxic Positivity Presents
You may hear the phase “have you tried [insert generic advice you’ve probably tried already]?” It might be yoga, keto, low carb, ice plunge. These are usually from people who want to offer something helpful, maybe they aren’t sure what to say if the news of your diagnosis was a surprise, or they’re trying to find a silver lining to ease their own discomfort at finding out your life isn’t as ‘easy’ as theirs.
There are also the variations of “the one trick to stop fibromyalgia holding you back” which will usually spark two initial reactions, a pang of FOMO which reminds you of the daily challenges you face that others don’t; and to consider jumping at this chance to feel better. Be wary of this rhetoric, it often comes with a price tag for a course, therapy or subscription service.
Then we have the person who has fibromyalgia but is posting inspirational quotes, juice cleanses and claiming their 5am 10km run has perfectly set them up for the day. They may well be doing these things, but remember, there are two sides to chronic pain and that person will still be experiencing symptoms, just choosing not to share that on social media (as is their right to privacy). But comparison is the theif of joy, so try not to be pulled into the thought pattern that you suffer more and it’s not fair.
How to Handle Toxic Positivity
You’ve got options.
You can listen, observe, trial the advice for your self and see whether you find it beneficial, but doing so with caution to prevent huge financial loss on unecessary “miracle cures” or treatments that require upwards of 20 appointments and seemingly very little symptom improvement.
You can thank the person for the advice and choose to explain you have tried it and it didn’t help, or smile and nod because you can’t find the energy to politely explain this for what feels like the 1000th time that mindfulness during a pain flare can be near impossible.
Lastly, my personal favourite, is to have a little fun with it and make up a more wild example of what’s suggested. “Yes, I tried yoga, but I prefer to practice in my garden at 9pm without clothes on because I don’t get the same refreshing breeze when I attend a class!” The tone is important though, I use obvious humour rather than sarcasm because it gets a little laugh, lightens the conversation and gives you an interesting segway to something else if you’d rather not discuss your health with that person.
Attitude 2: Pity/Self-pity
These attitudes are usually from two types of people:
- Those who just learned about your diagnosis and feel sorry for what you are going through, or;
- Those who have their own diagnosis and have been let down by healthcare professionals so profoundly (common with chronic pain issues) they feel there is very little hope, wallowing in self-pity.
When I first got my diagnosis, pity was the attitude I feared the most, the fear I would be viewed differently or treated differently was not a reality I wanted to face. This is why I hid my health struggles from people for a long time and never talked about it. If i needed to use crutches i would just cancel plans to stay home.
How Pity Presents
Hearing the words “I’m so sorry”, with the pity face and sometimes as far as offering to take my bag or have a rest used to make me cringe. It was the moment I felt like I stopped being Sam and started being a sick person. It’s so hard to remember in the moment but this is generally coming from a place of sympathy, because describing fibromyalgia, or any chronic pain, to someone who hasn’t experienced it can sound like a soul-destroying existance when you list the symptoms off.
Self-pity can be more subtle, it’s a self-deprecating joke about their health, a weary smile, a refusal to try anything at all because “nothing helps”. You’ll find people who wallow in their self pity, particularly online, on social media and in forum-type communities for chronic pain sufferers which are rife with negativity and self-pity. It’s okay to feel sorry for yourself, to mourn the health you feel you’ve lost, but it’s unhealthy to bury yourself in this.
How To Handle Pity
When faced with other peoples pity, it’s important to remember that it generally comes from a place of love and sympathy but expressed before realising the impact of the words can be comprehended by that person. I generally like to tell people that there’s no need to be sorry, I have a very active, fulfilling life, I’ve just had to learned not to cut corners with my health. Although the symptoms sound bad on paper, because it’s my “normal” I probably follow a more healthy routine than most people without a chronic condition. Reframe their response, that flash of pity is actually because they imagined their life with the symptoms you’ve described and had such a strong moment of empathy for you that they wanted to expressed their care the only way they knew how.
I have one piece of advice for people who find self-pity in others, particularly if it is in online spaces where you’re looking for support or shared experiences: Run. Remove yourself from that space. It isn’t the positive, comradery you need and it can very easily creep into your own thought patterns if you’re surrounded by it.
If you find yourself stuck in self-pity: Use the 24 hour rule. Give yourself 24 hours to wallow in your pain, sadness, pity, whatever you’re feeling and then take a step towards helping yourself in one way or another. That could be speaking to a friend, treating yourself to a nice bath or watching your favourite football team. Whatever it is, choose one positive step, no matter how small, to pull you out of self-pity.
Bonus Attitude #3: Disbelief
If, like me, you have spent time on trial and error approaches to learn what your body can and can’t tolerate, then it’s very likely your flare ups and symptoms are minimal, easier to hide, or easier to manage, this means very few people see you outwardly dealing with it.
This does invite the phrase “I’d have never guessed, you don’t like sick at all!”
This is generally well-meaning but can easily sting after a long fight to be believed by healthcare professionals convincing them that your pain is real and not a manifestation of depression. Constantly feeling that you aren’t unwell enough to buy accessible concert tickets for extra leg room, but not fit enough to live the life you’d choose if you could.
Try to remember that being told you don’t look like you manage multiple, often-limiting symptoms daily is meant as a compliment because, again, what that person is saying is “i don’t feel I would look/move as well as you do if I had those symptoms.” Letting go of the hurt attached to your diagnosis journey is a big part of that.
Final Thoughts
Living with chronic pain can feel exhausting – physically and emotionally – and it’s easy to find that frustration spilling into every part of life. That’s exactly why Wisbey Osteopathy was built differently.
Here, you’re not rushed through a conveyor belt of appointments. You’re given the time and space to be heard, to understand what’s really going on in your body, and to start moving forward with clarity and confidence.
Because when your care is tailored to you – grounded in both clinical expertise and lived experience – something starts to shift. You begin to feel understood. Supported. And more in control of your health again.
And you might already be wondering what it would feel like to finally have a plan that makes sense for your body. If that’s the next step for you, you can book your first appointment below.
Wisbey Osteopathy 