This was originally meant to be a Facebook/Instagram post for ME/CFS and Fibromyalgia Awareness Day. But it was too long XD
So here’s the full post. Check out my author Facebook or Instagram for the TL;DR versions.
Right now, I’m going through one of the worst fatigue flare ups I’ve had since my ME/CFS and fibromyalgia diagnoses.
I know what caused it, but those circumstances were unavoidable and I’m not going to share them because no one can change the past.
Cool as DeLoreans may be, they’re not actually time machines.
I’ve lived with these conditions for a decade and had a diagnosis since I was 2018.
Even so, it’s stille hard to write about.
Just typing this post caused pain in my hands and arms.
Not to mention the judgment and the bot replies that come from talking about long-term health conditions.
But spreading awareness is really important to me as the understanding isn’t there.
It’s too often seen as a fake illness because there are so. Many. Symptoms.
How can one person possibly have:
- Brain fog
- Fatigue (not the same as tiredness)
- Pain EVERYWHERE
- Digestive issues
- Post-exertion malaise
- Sensitivity to light, sound, and touch (among many other things depending on the person)
- Constant sore throats
- No physical strength to get out of bed
- Lightheadedness
Among many, many other symptoms I’m too tired (genuinely tired – I got about 4 hours of sleep) to list or look up.
Well-meaning friends and acquaintances tell me to ‘get well soon’ or ask what I’ll do when I’m better.
While I’m one of the most stubborn people you’ll ever meet, their definitions of ‘better’ usually mean ‘healthy’, while mine are ‘able to walk the dog’ and ‘write a book.’
There are days when I read a whole book to escape the pain; there are days when I can’t understand a text message.
And maybe I shouldn’t share this with you because it might impact how people feel about me and my writing.
But if it does…those aren’t my kinds of people. I want a community that listens and understands. Not judges.
MECFS is so painfully underfunded and misunderstood.
Many of us can’t leave the house.
And if people can’t see us, how can they understand us?
I’m one of the lucky ones. My symptoms improved dramatically to the point where I could do aerobic exercise. I still had bouts of pain and fatigue, but they were considerably reduced.
If what I’ve read is to be believed (see previous tiredness), those of us who do go into remission make up just 5% of MECFS patients.
I achieved that on my own, with very little help from any healthcare providers because they didn’t know what to do with me.
The guidance on how to treat MECFS was updated in 2018. It hasn’t yet reached a lot of people.
For obvious reasons, this is detrimental.
The fact that those of us who are chronically ill get targeted when we post about our health conditions is also detrimental.
I’d post more about my health conditions, but every time I mention fibromyalgia or MECFS, I get bots trying to sell me the latest fad.
And it is bots, not well-meaning readers. It gets tiresome to monitor them, but I try to block them as quickly as possible so that my readers don’t get lured in to that BS.
There are things that have helped me in the past, and I’m using those things again.
I do not want advice from a nameless, faceless bot who doesn’t understand my unique situation.
I’m the type of person who reads scientific studies for fun.
I’ve improved my own health alone before, and I’ve improved Millie’s health. I’ll bloody well do it again.
Without the help of a dodgy looking Facebook profile.
This recovery takes time and requires a lot of space.
It requires a lot of patience and support from those people around me.
Inevitably, this has changed relationships with many of the people in my life who don’t get it. Or worse: don’t even try.
If you know someone with a long-term health condition, and want to help but don’t know how, this is what I’d say:
- Don’t tell them to ‘get well soon.’ Try something like ‘I hope tomorrow is a better day’. That shows you understand it’s a journey.
- Ask how you can help them. Or, if they’re not sure/don’t have the energy to think, offer to do something simple like mow the lawn, walk the dog, vacuum, or cook a healthy meal.
- Listen. Don’t make assumptions about someone else’s health condition. Every condition is different and so is every person’s experience of it.
- Avoid offering unsolicited advice. Please. I beseech you. Lavender doesn’t cure fatigue and neither does yoga. (I love yoga and miss it greatly, but it is not a panacea and if I did it right now my boyfriend would have to pick me up off the floor because I’d be too weak and lightheaded to move).
- Be patient. Did I mention this is a journey?
- Send things to make them smile. Cute dog videos, writing memes, whatever you think they’ll like. This shows them you still think of them. It’s all too easy to get forgotten when you’re housebound.
- Don’t call them ‘strong’ or give them a pep talk about how resilient they are. Some people with disabilities don’t mind this, but the older I get, the more it irritates me. The undercurrent of this is that we can’t have a bad day or be vulnerable. If someone trusts you enough to open up about their health conditions, please listen. They’re so very rarely after a pep talk. Most of the time, we just want to feel seen and supported. All you have to do to provide that is listen.
If you are someone with a long-term health condition, know that I see you and you’re not alone <3
I have fibromyalgia. I’ve just started experiencing the lightheadedness and I’ve had this for 20 years. It’s hard for a doctor to give me other medicine because we can’t tell if I am not tolerating it because reactions are the same as fibro symptoms. This spring has been worse for me and I wander about why now because I notice you mentioned a bad flareup too. My extensive bloodwork with a new neurologist recently for excessive tremors came back as always in the past with positive ANA and lupus markers. Been through that suspected disease before because of that but it’s not. It’s the fibromyalgia and maybe something else I’ve never had considered. Don’t know what ME/CFS is. Going to look it up now but just wanted you to know as one of your readers I’m with you on your journey.
Hey Denise, I’m so sorry you have to deal with all of that. Sending gentle hugs and I hope you get some answers soon