A recent study found that reproductive health outcomes for folks with rheumatic diseases were affected by their conditions.
Conducted on a Finnish registry, they found that most rheumatic diseases caused higher risk for pre-eclampsia, preterm delivery, caesarean sections, and neonatal intensive care.
Note: this study seemed to be limited to cisgender individuals.
You can read the full study or a summary of it here.
Featuring over 100 worldwide, personal stories written by passionate and inspiring individuals living with arthritis, and their supporters; parents, caretakers, and medical professionals. Ranging from heartfelt, hopeful, motivating, and empowering, to heart-wrenchingly eye-opening, these stories shine a light on the realities of everyday life with arthritis and related conditions. Readers will get a first-hand look at the good, the bad, and everything in between, from those who are experts in lived experience and clinical matters. This book is not only a collective effort to raise awareness that arthritis is more than just a disorder that affects the joints and highlights that people of all ages can get arthritis. Most importantly, it explains there are hundreds of different forms of arthritis that impact all areas of life in profound ways, from physical limitations, mental health, social lives, relationships, faith and spirituality, finances, and work and career life balance.
One chapter is written by yours truly!
You can pre-order the book up until the release date – December 6, 2022 – here.
Has rheumatoid arthritis negatively impacted your relationships, intimacy, or sex life?
Don’t miss the ‘Sexual RAlationships’ Facebook Live on Wednesday 15 September at 6 pm BST. That’s 1 pm Eastern. You can convert to your time zone here.
Lohani Noor is a psychotherapist and psychosexual therapist. She recently was an expert on BBC Three’s Sex on the Couch. She is also the author of 12 Steps to Sexual Connection, available via Audible.
Be sure to register. You can email questions ahead of time by Sept 10.
The National Rheumatoid Arthritis Society (NRAS), is the only patient-led organisation in the UK specialising in rheumatoid arthritis (RA) and juvenile idiopathic arthritis (JIA). You can follow them on FB, IG, and Twitter. Make sure to check out their website as well!
You can view the recording below:
The following is an upcoming webinar from the ACR. Please note that this post has a major focus on cisgender folks and contains binary gendered language. It’s likely the webinar will as well.
Rheumatic diseases are lifelong conditions that affect over 54 million Americans, often during their childbearing years. Rheumatic diseases disproportionately impact women and certain rheumatic diseases are more prevalent in minority populations than they are in the general population.
On Tuesday, September 14, 2021, at 7 pm EDT, the American College of Rheumatology (ACR) and its Simple Tasks campaign will host a FREE webinar for patients, health care professionals, media and the general public on reproductive health and rheumatic disease. Attendees can expect discussion and resources from a panel of leading experts in rheumatology care, reproductive health, and parenting.
To register for the webinar, please visit rheum4you.org.
During the 90-minute webinar, experts will cover:
Panelists:
Webinar Moderator:
You can view the recording below:
While patients like me know that our health issues can interfere with our sex lives, it’s actually starting to be researched and documented!
That’s right – now you, too, can find seemingly redundant research telling you what you already know.
I know it’s easy to feel that way. The truth is, though, that research is finally catching up to common knowledge. Without basic research, it’s hard to expand and do what feels like ‘real’ work. Take Tristano’s 2014 writing on rheumatoid arthritis and sexual function, for instance. While it may be what we patients consider obvious knowledge, it opened the eyes of a lot of health care providers to the subject of sex and chronic illness.
Recently, a literature review on sex and RA came out. It found that there was a significant increase in what they call ‘sexual dysfunction’ for RA patients.
Back in 2016, a study showed that nearly a third of RA patients deal with major factors that inhibit their sex lives. That includes fear, insecurity, pain, comorbidities, and so much more.
What comorbidities? Well, secondary Sjogren’s syndrome is a major one. It often goes undiagnosed and un- or undertreated. These studies also have an average participant age of late 40s to late 50s, too. That means that issues associated with menopause might be being included as RA symptoms.
Medications bring their own side effects, too.
Unfortunately, most of these studies are being conducted on cisgender patients in heterosexual relationships. Between all this and the damage done by the phrase ‘sexual dysfunction?’ It makes me want to do my own research…
And I’m actually starting some in a few months in a larger population… but that’s a topic for another time. Stay tuned…
TW: Medications, death, grieving, and I cry for like ten minutes. Yay?
I’ve talked a lot about arthritis. For nearly the last decade, it’s the bulk of the work I’ve done. On my other site, I’ve worked on not only talking about my own health but how we can improve healthcare systems. Today, though, let’s stick to arthritis facts since May is Arthritis Awareness Month.
Now, if you’ll excuse me, I have to go listen to Wine & Crime to cheer my sobbing ass up.
Arthritis links:
Come see me in Milwaukee on the 10th: https://www.toolshedtoys.com/class-hurts-so-good-how-pain-disorders-can-affect.html
TW death and dying, mentions of abuse and neglect
Hooray, it’s World Arthritis Day?
Arthritis is something that’s been big in the news, even if you haven’t realized it. Lady Gaga and Selena Gomez both live with types of arthritis. Confused? Read on!
Arthritis isn’t just for old people, even though that’s who we usually associate with that word. What arthritis means is bone (arth) swelling (itis). Diseases that feature this symptom commonly, whether as the main symptom or just a possible one, often get listed under this umbrella. Some of the over 100 conditions that are under this umbrella include Rheumatoid Arthritis, Lupus, Fibromyalgia, Ankylosing Spondylitis, Gout, Osteoarthritis, Lyme Disease, Scleroderma, and Tendonitis. Sometimes, this list includes Inflammatory Bowel Diseases like Crohn’s Disease.
Most of these are invisible diseases, meaning you can’t tell someone is ill. While there are many people who utilize assistive devices like wheelchairs, there are plenty who don’t. That may be due to a lack of access or funding, physical accessibility of their surroundings, lack of a concrete diagnosis, concerns on displaying as ill/disabled, not needing them, or a number of other things.
These conditions affect 1 in 4 people in the European Union and 1 in 5 adults in the United States. Here in the US, it’s one of the leading causes of disability. More than 200 billion Euros and 156 billion US dollars are lost each year due to these diseases. That includes lost work time as well as medical bills. That’s a combined total of nearly 400 billion US dollars or 331 billion Euros.
Yikes!
The ACR says that 1 in 1,000 American children develop some kind of ‘chronic arthritis.’ The most commonly cited statistic is that 300,000 children have a type of JA, though it’s debated whether or not that is limited to just the three main types of JIA. These are Systemic, Oligoarticular (up to four joints), and Polyarticular (five or more joints).
I tend to think this number is more limited to the main JIA types, leaving out juvenile fibromyalgia and other conditions. Most organizations characterize these other kinds as ‘Pediatric Rheumatic Diseases.’
Some types of JA are short-lasting, like Kawasaki Disease and Fifth Disease. Others, like the JIAs and Juvenile Lupus, are life-long. Remission may be possible. Since that often depends on how quickly someone is diagnosed and treated, it’s not always achievable for many of us.
“Wait, us?” you say?
Yeah, I have SJIA. And it sucks.
Systemic JIA (or Still’s Disease) hits roughly 10% of the above statistic. A salmon pink rash accompanies this and is not usually itchy. (If I recall correctly from my copy of A Primer on Rheumatic Diseases, only 5% of us ‘enjoy’ the itchy version.) It can look like welts, small circles, or hives. This rash usually comes along with the fevers SJIA brings. It can also be triggered by stress, high emotion, and rubbing or scratching (AKA the Koebner Phenomenon).
Fevers can peak up to several times a day, but generally happen at least once a day. While it affects joints, SJIA also affects organs. Aside from the skin, it likes to attack organs heavily involved in the immune system like the spleen.
It can also cause Macrophage Activation Syndrome (MAS) which can be fatal.
The SJIA communities I know have lost nearly a dozen children and adults over the last few years due to MAS or other complications related to the disease. In 2012, I actually lost my best friend at the time to complications from an infection related to her SJIA.
Even other kinds of arthritis can be fatal.
Living with one of these conditions can decrease your life expectancy by up to 15 years. Each patient handles these kinds of issues their own way but I, for one, am scared as shit. I try not to show it that much, but I have ‘existential crisis’ days where I’m constantly having panic attacks over death and dying.
It’s fucking scary.
Like anyone, I have good days and bad days. After Monday’s PT, I found myself incredibly sore. I’m still dealing with swollen knees from it and it’s Thursday. I have canes, but they try to murder my hands and I can’t do without typing. It’s ‘easier’ to just deal with the knee crap than work to find something better.
When you have one type of arthritis, you can wind up with others. My kneecaps grind and hurt all the time, part of patellofemoral arthralgia. I suspect I have tendonitis in a few spots and have dealt with bursitis a few times, too. Fibromyalgia kicks my ass often. I struggle with holding hands, playing with the piggies, and even wearing clothes. That doesn’t even get to things around the house or work stuff I do. It sure as hell doesn’t address my intimate life, either.
I take more naps than I would like. I have to rely on medications to function. If I’m late by even ten minutes, my body screams. I have a million things to try to lower my pain – lotions, migraine glasses, copious amounts of caffeine, CBD oil, high-tech gadgets, etc. Still, I wind up struggling through at least half my week.
Fatigue, brain fog, and chronic pain all enjoy working together to harm us. They bring depression and anxiety to the party, too. My childhood adds just a dash of PTSD for good measure. Who am I kidding? It’s more than that. Hell, I can barely sleep in my bed right now because of pain and nightmares. It’s really, um, unpleasant? Uncool? Shittastic?
Still, I’ve been on a biologic medication that keep my SJIA steadily ‘okay’ – and has since the summer of 2015. It’s the longest I’ve been on one biologic. Seven different meds have failed me in eight years. Kineret keeps my labs looking… well, the best I’ve ever seen them in my entire life. I’m very lucky to be sitting here today, especially with 14 years of neglect, without real treatment.
I very easily could be dead. I maybe even should be, statistically.
Despite being in unrelenting pain, I know that I’m not alone. There are so many of us in similar situations, dealing with undertreated pain. We go through life looking for resources to help us live as well as possible, even creating them if we have to.
Shit, that’s why I write about what I deal with, right?
Plus, I’ve gotten to do some pretty cool things and meet some of my heroes. So that’s neat.
At the end of the day (usually), I’m still alive. I’m still living the best life that I can while I can. In the end, that’s all we can do, right? Live well, help others, and push for better changes in our world.
Hopefully, snagging some information on arthritis can help y’all be mindful of what others may be facing. At the very least, I hope I undid some of the stigmas out there.
On my personal site, Not Standing Still’s Disease, I call my husband ‘T.’ If you see it here, that’s why.
I haven’t talked about my marriage as much on here as I have elsewhere.
In September, we’ll have been together for a whole decade… which is a little daunting to think about. It feels like longer and shorter at the same time. Sometimes I forget if it was him or someone else I went to events with.
When I met him, I was pretty sure we’d get married. After the last few relationships I had, I knew I wanted to disclose my chronic health issues early on. I’d been led on by a few guys who claimed they wanted a long-term relationship but only wanted sex.
I mean, I was 19 so sex was totally fine with me! Mostly I was tired of the deceiving part.
T and I got frozen custard and I mentioned that I had “this arthritis thing.” The way I phrased it really helped him to not catastrophize it. Then again, that’s when I didn’t have medical care and wasn’t diagnosed with most of my other health things.
I interviewed T in 2012 for NSSD. Check it out here. Ironically, that was also the first year I started talking about how arthritis crud affected our sex life.
It’s no secret that my health fun has been hard. It seems like it keeps getting worse, like now when I’m dealing with undiagnosed stuff. T’s still supportive and as helpful as ever. He still takes a lot in stride, holding back a lot of stuff he should probably tell me (like how my lack of vacuuming bugs him, etc.). Add to that how us both being on antidepressants has killed our mutual sex life and… well, you figure out quickly why I review sex toys.
Still, he’s my penguin.
I see a lot of disabled or chronically ill people who overly praise their partners. That’s something I felt pushed to do in the beginning when I knew no other 20-year-old would put up with massaging my knees. Now that we’re on either side of thirty and both well-versed in social justice, I don’t feel that way.
Don’t get me wrong – he’s awesome. Our relationship is good. Things – including my illnesses – are stable and at least semi-predictable. We’ve gotten into a rhythm that works for us, have both gotten better at communication (after a number of stumbles on my part), and I know how to read him pretty well.
The thing is… praising him for sticking with me when I’m so fucking ill just perpetuates the myth that those of us with health crap are horrible choices for partners. I won’t fall into the ableism trap that is more-abled-partner worship.
People fall into this trap a lot. It’s easy to do, given messages we receive about our worth as people who are chronically ill or disabled. It’s assumed that our lives aren’t worth living or that we should be somehow pitied because of our existence. When we worship our partners for ‘putting up’ with us, it just reinforces those ideas.
The world is full of assholes who don’t see disabled people as people. They don’t think living our struggles with us is a worthy journey. That doesn’t mean we should sanctify the non-assholes, though, for being decent people. The reality is that we all have different needs in relationships, whether that’s related to a disability, past experiences, abuse, or a variety of other factors.
Like any person, disabled or not, we all have positive and negative attributes. When you’re a partner, though, you work together and can help to balance each other out.
Sure, there will be more time spent at doctor appointments or sitting in waiting rooms while I get MRI after MRI than there would be while dating an abled partner. There will be more frustrations with health, the medical system, and other forms of systematic oppression. Politics will start mattering to you even more, especially attacks on health care rights… which means you’ll be groggily going to work after staying up until 2 in the morning watching C-SPAN.
That said, I can provide a lot more empathy than the average partner. I’m pretty good at working around things I can’t do, whether that’s sexy or not. You’ll get to help go through pictures of me that are sexy for the sake of being sexy. You’ll always have someone who goes with you to doctor appointments and can advocate for you, there or calling to order pizza.
Just because some parts of our lives are harder because I’m disabled doesn’t mean I’m not a badass partner – or that I should feel crummy for being sick. Without that power difference, there’s really no need to put T on a pedestal. I can still appreciate the neck rubs and late night conversations without deifying T for ‘putting up’ with my illnesses.
Many of the resources you’ll find on our Resources page actually come from arthritis-related organizations and writers. There’s a good reason for that.
Both Mariah and I deal with types of arthritis. We began writing on our personal sites about our lives with arthritis and how it affects everything from bathrooming to sex. We are incredibly lucky to travel in many of the same illness circles, leading us to be able to see each other a few times a year in a world where we’re lucky to see our siblings that much in person. We even presented at the Juvenile Arthritis Conference for the Arthritis Foundation to discuss relationships and sex with the 18+ young adult crowd this year! (Looking for the resource sheet we used? CLICK HERE!)
World Arthritis Day is a day to raise awareness of all things arthritis, from our medications to how it affects our lives to more.
Did you know that ‘arthritis‘ is an umbrella term? Over 120 diseases that have arthritis (inflammation and/or stiffness in the joints) as a symptom. These can include things like degenerative diseases of the spine, Fibromyalgia, Rheumatoid Arthritis, Crohn’s Disease, and more.
While we may more commonly imagine osteoarthritis when someone says ‘arthritis,’ infants can even be stricken by forms of arthritis. Types of Juvenile Arthritis affect over 300,000 children in the United States and even more worldwide.
Some types of arthritis have been shown to have genetic links or to be hereditary like Ankylosing Spondylitis. Others, like Fibromyalgia, have been shown to have ties to trauma and injury. An interesting study examined the rates of Fibro in those who survived the Holocaust and their peers, finding that those who went through the traumas of the Holocaust had far higher rates of Fibro.
If you deal with one or more types of arthritis, please know that we are here for you.