Here on the blog, I feature a bi-weekly interview with an expert on how to write about a character with a chronic illness or disability that they struggle with. See a list of all the interviews here! While I still recommend getting a sensitivity reader for your work, use these posts to consider how you can accurately portray disabled characters. Today’s feature is fibromyalgia and Hypermobile Ehlers-Danlos syndrome with Chloe Metzger. Shout out to Chloe for taking the time to answer my questions!
1. Could you describe your symptoms and the experience of discovering them?
In terms of fibromyalgia, I get chronic pain across my body, fatigue, brain fog, and issues with body temperature. I can have sensitivity to things that shouldn’t be painful (allodynia), stiffness, headaches, pins and needles, and non-restorative sleep. There are over 200 symptoms of fibromyalgia, so no two people are the same. These symptoms came on gradually after fracturing my spine when I was 20.
For Hypermobile Ehlers Danlos syndrome, I have incredibly bendy joints, which means that they will often partially dislocate or just dislocate themselves; they usually pop themselves back in. Also, joint pain, fatigue, stomach issues, and I bruise like a peach. I have had these symptoms since I was a teenager but was misdiagnosed as a problem with my knees. There are 13 different types of EDS, all with different symptoms.
2. What do mild, average, and terrible flare-ups each feel like? Do they come on slowly? Do they hit you all of a sudden?
With fibromyalgia, a mild flare up will include being more tired than usual and feeling quite achey, like when you’re getting a cold. An average flare up is when I’m exhausted, all of my joints hurt, and I’m just struggling overall to get things done. My worst flares feel like fire ants are attacking my body. Sometimes I can’t move parts of my body very well, and I need to be on a sofa with a lot of pillows and blankets with my strong painkillers. I can usually guess within an hour of waking up what kind of day it’s going to be, but the more tired I get the worse it feels.
For HEDS, it’s different. There’s less of a flare, and things will just pop out of where they’re meant to be. Some days are worse than others, particularly with the stomach issues; they can be incredibly painful.
3. What are some of your biggest frustrations living with chronic pain?
The fatigue, for me, is the most frustrating in terms of the condition, but other than that it’s the way other people think of and see you. There’s a lot of people who want you to prove you’re “sick enough” or “disabled enough.” I love going to gigs. Some venues are super helpful, others make you prove it and have even been known to make you pay for the top price ticket because that’s where accessible seating is, which is so frustrating. I didn’t ask to be like this.
Also, people who sit on the train/bus and look the other way so they don’t have to see you struggling to stand. Usually for those journeys I have my walking stick too. It makes me tray and avoid rush hour as much as possible because unless someone is nice enough to give me a seat I end up sitting on the floor of the train—and we all know they’re not the cleanest!
4. Does anything help you feel better or make life with these conditions easier?
Pacing myself (although I’m not very good at it), people understanding when I need more time or support. Just someone offering help or being helpful when I’m struggling makes a world of difference.
5. Do you struggle with any particular emotions due to chronic pain?
I feel a lot of guilt. Guilt that people have to do things differently sometimes, guilt that my whole life changed, guilt I’m not performing anymore. Also anxiety, and the worry that I’m “not sick enough” for support.
6. How do other people behave around you? Do they treat you differently?
Not massively if they know me. Some people are curious when I use my walking stick because I don’t use it every day. I did find people acted very differently when I used a wheelchair, though, especially if I stood up out of it—like it was a miracle. People don’t often realize that ambulatory disabled people exist!
7. What was your diagnosis experience like? How has your experience with doctors been?
So, with fibromyalgia, I fractured my spine, it healed, and I was still exhausted and in a lot of pain. They kept trying different things, but nothing worked. I kept going back to the doctors and the surgeons and they just couldn’t see anything. I remember crying and begging them to do something. They weren’t unkind, they were just confused. Then I watch the Lady Gaga documentary, Five Foot Two, where she shows having fibromyalgia, and it was like a lightbulb. A friend who has it also mentioned it could be the case. From that point I was lucky—I had a GP who listened and sent me to my Rheumatologist, who is fantastic, and they both agreed.
With HEDS, growing up, I had problems with my joints and my stomach, but no one thought the two were connected. They said I’d grow out of the bad knees (I never did). It was only about 2 years ago I thought these things aren’t fibro and saw Jessica Kellgren-Fozard talk about EDS and I matched a lot. I thought about it for a long time before going to my GP and was quite firm—I wanted to go back to see my Rheumatologist, and she said it sounded right. I paid to see him because I didn’t want to wait however long because of the pandemic.
I have had problems in the past, particularly in A&E, where people haven’t believed me when I’ve tried to say what’s happening.
8. Have you seen this condition represented in media (TV, film, books, video games, etc.) before?
I’ve not seen much at all about Fibromyalgia in a creative sense! I’ve never seen or read about someone with HEDS, either, so I can’t comment.
For both, I think creatives need to be aware of the sheer scope of these conditions and that they can impact any age!
9. What are things you can’t do because of your conditions? What are things you can do?
For both conditions, it definitely depends on the day.
I can’t walk long distances without the support of a walking stick and rest breaks. I can’t be as spontaneous as I want to be, and I have to plan things out a lot more than a normal person. I have to plan rest days if things are busy.
I can nap almost anywhere at this point! I can do most things but maybe not as much as others or they’ll take more thought/planning.
10. What advice would you give to someone who wants to accurately write about a character with this condition?
Remember good days and bad days. The flotations are a big part of both conditions. One day you can be managing really well and then others you’re on your ass because you’re in flare or you’ve dislocated in your sleep. Each day is different.
Chloe Metzger is a 23-year-old blogger, writer, musician, and hamster mum. As you can see, she is incapable of taking a serious selfie and posting it as a profile picture… sorry, not sorry.
On her blog, you will find a mix of her own personal musings, fabulous feminism, reviews, relationships, mental health, hauls, and more.