I've been quiet here lately because I'm at a loss as to how to help, what to say, what to do. I want to support you, but I don't know how. 💔😷
Many of you - my friends, my community, my spoonie support network - are in serious danger. You're sad, scared, and angry, and your emotions are 1000% justified. I'm feeling all of those emotions too, and I'm only at mild risk because of one medication I'm taking. I'm privileged enough to have secure internet access, and my husband has a steady income right now because he works in healthcare.
But I'm still thoroughly shaken up. And if I feel unsafe despite all the privileges I have, I can't imagine imagine how much more horrifed many of you are by comparison.
@the_queer_counselor pointed out that what we're going through is collective trauma. @functionalish pointed out that the scale of this trauma is unprecedented because it's not confined to a single geographic location... It's widespread, inescapable.
I feel helpless against the sense of imminent doom and scarcity.
For now, I'll simply continue to raise up your voices, share your posts, echo your sentiments, and shout about disability advocacy from the rooftops. 🗣️♿ I'll keep staying home. And I'll keep reminding you that it's okay to feel all the feelings. Your feelings are VALID.
You don't have to be productive, positive, or fearless. It's okay to be angry about the ableism you're facing. You're right to speak up. 💯❤️
[Alt-text: Dark teal background with a light teal image of a face mask. Below the face mask, light teal text reads, "It's okay to be unproductive. It's okay to be depressed. It's okay to be anxious. It's okay to be angry. It's okay to grieve. This is traumatic." At the top and bottom of the image, there are some relavant hashtags including, #protectthevulnerable #wearethevulnerable #nobodyisdisposable #noicugenics #thefutureisaccessible #believespoonies #stayhomesavelives #disabilityadvocacy ]
In the @invisiblenotbroken podcast, Monica sometimes compares life with chronic illness to the Upside Down in Stranger Things. 🙃 This metaphor always resonated with me because when I became ill back in 2015, I felt like suddenly I was living in an alternate reality, completely separate from (but still parallel to) healthy-world and all my healthy friends.
This metaphorical Upside Down looks eerily similar to healthy-world, but it can be scary, dangerous, and isolating. And reaching out to healthy people on the other side often feels like the scenes in season 1 where Will Byers is trying to communicate to his mom via the Christmas lights... It requires some translation to even begin to explain to our situation to people on the other side. 💡🎄
What feels so uncanny about the #covid_19 pandemic as a chronically ill person is the way that suddenly everyone has been plunged into the Upside Down with us. 🦠😷
Many of us in the chronically ill community were practicing #socialdistancing before there was a word for it and using the internet as our primary means to access education, employment, and community. We were already lonely and restless. We were already struggling financially. We were already living in fear for the future of our health.
It's odd to see healthy people realize what disabled & chronically ill communities have always known:
That human health is FRAGILE and VALUABLE. That social & financial safety nets are essential. That being stuck at home is lonely. That online community still counts as community. 😷💕
My hope is that eventually when the rest of the world leaves the Upside Down, they'll come out of it with more empathy and compassion for the chronically ill & disabled community. ♿
[Alt-text: a white woman with red hair is laying on her back on the floor with her feet up on the wall and her cat climbing up onto her chest. She's in the position many POTS patients assume when they're trying to let the blood drain back from their feet to their heart.]
#strangerthings #upsidedown #feetupclub #potsielife #potssyndrome #coronavirus #stayhomesavelives #stayhome #healthcareisahumanright #protectthevulnerable #wearethevulnerable
🇺🇸 Here in the US, many of us have spent the past three years living in fear of what would happen if there was a national or international emergency during the Trump administration. And now we're watching in horror as this worst case scenario unfolds before our eyes.
Last I checked, epidemiologists estimate the actual total of coronavirus cases here in the US is 6-10 times higher than the known cases, given the exponential spread of the virus and the unavailability of testing. We're not exactly flattening the curve, and this only the very beginning. All in all, things are looking grim indeed, not only in the US, but around the world. 🌎
But that doesn't mean that our local governments, communities, and businesses can't pull together to protect each other. The key here is community cooperation, communication, and support. 💞
Now is the time when we need to get serious about checking in on each-other and taking care of each-other. Now is the time when we need to put our community's health above all else. ⚕️💉
💪 All who are young and healthy: Offer to pick up their groceries and medications for someone who is older, immunocompromised, or quarantined. Don't go to the hospital unless you are truly in need of emergency help. And please, for the love of God, take social distancing seriously.
💵 All who are financially privileged: Offer financial support to a someone who is living paycheck to paycheck, and support small businesses in your area if you can do so safely. Donate to non-profits that provide food and shelter to people in need if you can.
👨💼 Larger companies: Put your community over your profit margins. Keep the power on, the internet on, tenants in their homes, food on the table. And please pay your hourly employees sick leave.
These are dark times, but I know we can get through this. ❤️ PS: forgot to put my signature on this post, but please just be kind and credit me if you repost. Thanks! ☺️
[Alt-ID as modified alt-text]
#coronavirus #covid_19 #wearethevulnerable #protectthevulnerable #healthcareisahumanright #immunocompromised #elderlycare #medicareforall #AutoimmuneDisease #autoimmunearthritis
[Alt-id: photo of a laptop with a white screen and black text that reads: "I believe working & learning from home is a reasonable accommodation even when there's no pandemic."]
🦠😷
Story time:
Before I left my previous job, my team got moved into an open-layout warehouse. Beside us, there was an active renovation project. Fluorescent lights were regularly turned on and off for some reason. Construction equipment screeched and banged for weeks. The industrial HVAC system whirred at high volume all day. Hundreds of square feet of carpet were glued down right beside us. The lights, the sounds, and the chemical smells were all migraine triggers for me.
I submitted an urgent request to work from home during the worst bits of it, and after much hand-wringing from the department leadership and repeated reassurances on my part that I would use this accommodation wisely, rarely, and discreetly, my request was eventually granted. 💻 But the wheels of corporate bureaucracy move slowly. I didn't get a company laptop or VPN access til more than two months after the construction project was complete. A more senior chronically ill co-worker advocated for me through all of it, but it made little difference. By that time I got the accomodations I needed, I was already on my way out.
For the sake of my former coworkers, I'm delighted to hear that this same employer has almost overnight figured out a way to allow everyone who needs to work from home to do so. This is a crucial step to keeping vulnerable (including many chronically ill/immunocompromised) people healthy! But it also hurts to see how quickly they've been able to make changes in this situation, when they dragged their feet with me for so long.
I've heard so many similar stories from all of you. ❤️ This is one of the many things about the Coronavirus pandemic that's triggering for our chronic illness community. Stay safe and take care of yourselves. 😷
If you repost, please tag me in the caption. 😌 And if you love my work, you can buy me a coffee at the link in my bio. ☕
Happy [belated] International Women's Day!
Invisible Illness is a Feminist Issue.
🙌♀️
In the book Doing Harm, Maya Dusenbery writes this on page 11:
"What I've come to see is that a historically male-dominated medical system has created two interlocking problems that affect the quality of care women receive. First there is a knowledge gap: The average doctor does not know much about women's bodies and health problems that afflict them. [...] Second, there is a trust gap: women's accounts of their symptoms are too often not believed. For centuries, Western medicine tended to throw many of women's inexplicable symptoms into the catch-all category of hysteria."
According to Dusenbery, the problem boils down to this:
🥄There's been historically little research on the diseases that primarily affect cis-women and trans-men like #AutoimmuneDisease, #POTS, #Fibromyalgia, #MECFS #ChronicMigraine, #EhlersDanlos, #Endometriosis, and so many others.
🥄Because our illnesses are not researched, they're not scientifically understood and thus continue to be plagued with suspicions of hysteria.
🥄Because our illnesses are viewed with so much suspicion, patients have to fight for an accurate diagnosis and an effective treatment plan.
🥄When patients are undiagnosed and untreated, this puts them at an elevated risk of developing a mental illness.
🥄When patients develop a mental illness, that only increases their doctors' biases against them and their risk of being incorrectly labeled hysterical... And the cycle continues.
It's no surprise is takes many years for most of us to be correctly diagnosed. I highly recommend the book - Dusenbery inspired a lot of my posts and the hashtag #BelieveSpoonies. Other books that have been recommended to me on this issue include Ask Me About My Uterus by Abby Norman and Pain and Prejudice by Gabrielle Jackson.
If you repost, please tag me in the caption. 💜
Alt ID as modified alt-text.
PS: Meant to post this yesterday, but I was having low-pain weekend, the weather here was beautiful, and I wanted to prioritize getting out and hanging out with Aaron and a couple college friends. ☺️
For me, one of the hardest things about being chronically ill & disabled is the way that it has tested my relationships with friends and family.
Before becoming ill, I had the spoons to:
🥄 Say yes to every invitation from the people I love.
🥄 Be flexible and easy going.
🥄 Be quippy, clever, and funny.
🥄 Regulate my emotions.
🥄 Participate in big group events, without flaring up from the sensory overload.
🥄 Eat, drink, or do whatever I wanted to.
🥄 Use athletics as my primary means of meeting people and making connections.
Now I feel high-maintenance. I have non-negotiable dietary restrictions. I have a finite amount energy. I can only run a mile, when I once ran marathons. My brain feels foggy, and my emotions are all over the place. I have to be measured and strategic about when, where, and how often I schedule social outings. 🥺 Some of my relationships have grown stronger through it all, some have grown distant, and some have sadly fallen away completely. And unfortunately, making new IRL friends is really hard as a spoonie, because pursuing a friendship takes a LOT of spoons.
The sense of loss I feel over this is profound, which makes me only that much more grateful for YOU. ❤️ This community is amazing, and I continue to be overwhelmed with the love, support, and grace that friends I've never met in real life show me every day. I'm so glad I can lean on you whenever times get hard.
I found this community when I needed it most, and this opportunity to talk openly about disability activism, physical health, mental health, has genuinely changed my life. 🥰 I wish I could meet all of you in person some day.
[Alt-text: background is a starry night sky sillouetted with dark trees. The white text reads, "Loneliness is a reality of being chronically ill. That's why this community is so important to us."]
#spooniesisterhood #spoonielove #spooniesupport #migrainecommunity #migraineadvocate #mightywithmigraine #potssyndrome #potsawareness #spondyloarthritis #spondylitisstrong #chronicpain #chronicillness #butyoudontlooksick #chronicmigraine #believespoonies #spooniecommunity #invisibledisability #invisibleillness
PLEASE SHARE this with your chronically ill friends and loved ones, especially those who struggle with their mental health (almost all of us do) because THIS IS IMPORTANT. This could save lives.
💜🙌
Crisis hotlines and crisis text lines always seemed intimidating to me. I figured contacting one would be a lot like calling 911 (our emergency number here in the US) and could ultimately result in hospitalization or institutionalization. 🚑
But recently I started training to be a volunteer Crisis Counselor at the Crisis Text Line and I've discovered that it's not what I thought it would be at ALL.
Based on my training so far with the Crisis Text Line, here's what I've learned:
✅ When you contact a crisis hotline, you'll be put in contact with a trained, supportive, nonjudgmental volunteer who probably has personal experience with mental illness of some sort.
✅ If you contact a hotline that is geared towards a marginalized demographic (I.e. the Trans Lifeline, the Trevor Project, or RAINN) you'll most likely be talking to someone who is also a part of that marginalized group. The Trans Lifeline in particular is run entirely BY trans people FOR trans people.
✅ Like a good therapist, your crisis counselor should ask you elaborative questions, notice your strengths, help you identify your support system, cultivate a sense of calm, and collaborate with you to create an action plan.
✅ Activating an emergency response is an absolute last resort for your crisis counselor - they prefer to deescalate the situation and provide you with the resources to avoid future crises.
✅ You're typically allowed to remain anonymous during a crisis conversation if you prefer.
✅ These services are completely FREE.
The list of crisis hotlines I have provided is by no means comprehensive. For a full list of crisis hotlines in all countries, see the Wikepedia article, which I have provided a link to in my bio.
If you share, please tag me in the caption. ☺️🙌 Thanks!
Alt ID as modified alt-text.
#endthestigma #mentalhealthmatters #mentalillnessrecovery #mentalhealthawareness #suicideprevention #anxietysupport #depressionsupport #ptsdsupport
Sometimes I think being sick has made me more cognizant of all the simple pleasures in life - things like sunsets, nice weather, low-pain days, calmness, snuggles on the couch, a good new Netflix series, and comfort food.
So on this 64° day, where I've managed to keep the head pain at bay with a couple of Tylenol, go for a long walk, and bake some gluten free poptarts, I'm so grateful. Life with chronic illness gets really freaking hard sometimes (Re: this week's migraine flare-up) but it's also beautiful and meaningful and happy too. 🌄 Spring is in the air, and after a hard week, I'm feeling hopeful. 🌺
[Alt-text: some bare trees sillouetted against an orange and blue sunset]
#chronicallystrong #chronicallyhopeful #chronicmigraine#chronicpain #chronicillness #invisibledisability #invisibleillness #spooniesisterhood #migrainelife #migrainewarrior #potssyndrome #spondylitis #kansassunset #kansasskies #springhassprung #netflixandill
To give you a little perspective, when you Google "most painful illnesses" migraine is often ranked near things like kidney stones, appendicitis, stomach ulcers, heart attacks, slipped discs, and even broken bones, depending on the source. I haven't experienced any of those acute issues myself, but I don't doubt it. @beautyandthemigrainebeast1 once said that child birth was easier to cope with than her worst migraines. 🤯
Not every migraine rises to that level of severity (most of mine are manageable now that I'm well-medicated, thank God) but it does happen from time to time - even to those of us who are lucky enough to feel like we've got this disease almost under control.
That uncontrollable 9/10 pain happened to me last night for the first time in years, and I'm shaken up about it.
I can remember every 8 or 9 out of 10 migraine in excruciating detail 🥺 the panic, the writhing, the sobbing, the fear that it will never end... It hurts enough that instinct is telling you it's a genuine life or death emergency, 🚑 but it feels silly to go to the emergency room because logically you know it's "just" a migraine. You have to hang on and survive it 10 seconds at a time. And you pray that it will end soon and another of this caliber won't happen again for months or years. But you know another like this will happen eventually.... It's really just a matter of when. That's the nature of the disease.
But the human brain has a way of forgetting the actual physical sensations of that level of pain. It's a protective thing, I guess. So in those moments when it gets that severe, the pain is still shocking each time. 🤯
[Alt-text: white background with black text that reads, "In all my life I've never experienced anything more painful than my worst" Then in large, all caps purple font it says "MIGRAINE ATTACKS". Then in smaller font below that it reads in black, "which leave me writhing with pain, sobbing, and afraid. They're made more terrifying by the fact that they're not always preventable or escapable."]
#chronicmigraine #clusterheadache #migraineattack #migraineadvocate #chronicheadache #episodicmigraine #mightywithmigraine #mindfulmigraine
