Being ‘brave’ (actually, I’m angry)

A new leaf sprouting up from the middle of the dirt on my “Hope” plant. (Photo taken 5/5/2019)

So, last month (May) was #MEAwareness Month, and I did what I could by publishing two posts (instead of just one): May is #MEcfs Awareness Month • #MillionsMissing (on the 1st), in which I included photos of how my illnesses affect me, and #MEcfs Awareness: Guest Post on waking up to severe m.e. (on the 15th, my ‘regular’ day), in which I included a photo showing what my advocacy did to me☆. I posted those photos on all my social media, publicly, so people could share.

People commented on my posts on facebook and my blog that I am brave for talking about my chronic illnesses, and for posting my raw, not-pretty photos on social media.

Well, I’m here to tell you:

I am not brave.

I’m just doing the job that’s before me. I’m just growing, like my hope plant, despite of obstacles in my way, including my very own body.

Nope, I’m not brave. I’m angry.

I’m infuriated.

I’m angry at the medical professionals who dismissed me, who told me I should be able to imagine my pain away, that I just needed to get out of the house, that I am “fine”; the doctors who blame my physical symptoms on my mental illnesses; the people who told me I shouldn’t try to find answers and that I just need to find a job.

I’m angry at the narrative that says a “medically unexplained symptom” must be caused by psychological issues, forgetting that just because it’s currently “medically unexplained” doesn’t mean it’s not caused by something entirely physical. Just because we don’t have a test for it yet, doesn’t mean it’s not caused by our physiological makeup.

I’m angry on behalf of the people who die waiting for disability benefits, for the people who have their benefits cut, for the people who try to improve their lot only to lose everything, like this college student in New Jersey who has spinal muscular atrophy type 2. Her insurance company cut her carers’ hours from 16 hours per day to 10, despite a judge ruling in her favor, meaning she won’t be able to finish college without that physical aid. And all because she dared to accept a summer internship that pays all of $14 an hour! (The latest story I found, “Disabled Howell student gets flood of support, but little traction in battle against state” is dated June 4, 2019, and doesn’t have many more details.)

And I’m angry for Charis Hill (who I’ve mentioned before), an advocate for her disease, Ankylosing Spondylitis, whose doctor appointments are now going to cost her $445 EACH visit, simply because she has over $2K in the bank, money she’s saved carefully so she could buy her own home in order to protect her future.

I’m angry that disabled people have to continuously prove they are ill, like this mother in the UK who has terminal breast cancer, yet kept getting asked to attend meetings to continue receiving her disability payments. (Sadly, I can’t find any updates on her or her case.) Or this woman, who was in a coma before she died in 2015, yet ordered to find work.

I’m angry at all the things we are continuously told to try, like “be positive”, “have you tried yoga?”, “you need to exercise”, “you need to try harder”, and a million different other so-called “cures” (which are not).

Do people not realize we have tried everything we possibly can to get well?!?!? And yeah, I get that you’re “well-meaning”, but lemme tell you, it gets super old, especially when these “well-meaning” comments do not stop, and the commenter does not bother to listen to what we have to say about it and how / why it’s problematic. Not to mention, implying we haven’t tried everything is hugely insulting!

(For the record, I have a ‘gratefulness practice’ and a ‘mindfulness practice’ and a ‘meditation practice’ and a ‘journaling practice’; I see a chiropractor as often as I can get out of the house and he can fit me in his schedule, and I do tapping; I do yoga/gentle stretching/ the exercises my physical therapist gave me every.single.day; I’ve tried acupuncture, Chinese herbs, massage, CBD, THC, kratom, LDN, reiki, chlorophyll, liver detox, turmeric [which I’m allergic to, so that’s NOT FUN], and lots of other stuff I can’t currently remember; I currently take a huge amount of medications, supplements and vitamins; I’ve eaten gluten free and [mostly] sugar free for the better part of three years; I went on an anti-mold diet and we did mold remediation on our home; I drink approximately three pints of fresh, well water a day [thus, not treated, and not from the faucet]; I even had my brain zapped with magnets [via transcranial magnetic stimulation, or TMS] for 36 [non-consecutive] hours, which was really weird and noisy, and hurt me very much, since I had to stay still for so long, but which also ultimately did nothing but cost me money and lots of time [about 90 minutes’ drive round trip for each 1 hour appointment!], and change the location of my migraines from the top of my head to the bottom of my skull; and still people seem to think I haven’t done enough, or that I’m not ‘trying hard enough’! §)

And I’m angry at the sentiment that lauds the “good disabled person” who “never complains” and “inspires others”, and labels those of us who talk openly about our illnesses as “complainers”. This “inspiration disability porn” has GOT to stop. (And please read that article to find out why it’s so damaging!)

And conversely, I’m angry at the completely made-up idea that people on disability are “lazy fakers” who “don’t want to work”, and that there are people who “actively make their own pain worse” (direct quote from an idiot on twitter), when in fact, the opposite is true. Every sick and disabled person I know wants nothing more than to get well! Plus, why would we fight like hell – it’s so much work, you don’t even know! – for disability benefits that will likely put us just barely above the federal poverty line, if not below?

Which, by the way, the United States’ federal poverty line is $12,490/year; the average disability benefit for 2019 is $1,234/month, or $14,808/year. (And in case you’ve forgotten your math classes, average means some are higher, and some are lower.)

The national average for rent on a 1-bedroom apartment is $955/month. (In Atlanta, the average rent is $1,379/month. And that’s for the average size of 985 square feet! And that means your rent costs $145 MORE per month than you’re receiving in benefits!) So, if you’re in the average, and not in Atlanta, that leaves you just $279 per month to see doctors, get your medications (and remember, if you’re disabled, you probably have a lot of healthcare needs!; my meds alone cost over $300/month, or at least, that’s what they cost when I figured it out over a year ago), food (in my case, I can’t have anything gluten, and gluten-free options are 1/3 the amount at 2x the cost!), pay for utilities, all the costs of a vehicle, pay for your phone (which you cannot do without these days), and anything else you might need.

Not to mention, there are hidden costs of being disabled that you probably never think about; see the twitter hashtag #TheCostOfBeingDisabled for example upon example of this.

Also note that, as Charis Hill said on twitter: “SSDI payments are based on our careers before disability, not on what we need to survive. The ableism of capitalism causes poverty.”

This means that I, dSavannah, was an idiot for working all those years in non-profits in order to make a difference and because they fueled my passion.

And, it’s the same in Canada, as Nikki points out in her June 11th post “Living wage vs. Disability income“.

I’m angry I’ve been denied disability benefits three times, and for my appeal, I have to prove – again! – I’m disabled to get those benefits by filling out unnecessary, redundant paperwork that is taking me untold hours, for benefits I’ve paid in to since 1987, benefits I wish I don’t need, but I do… and that all the work I have to do to prove I am, in fact, disabled, is making me sicker.

☆I’m angry that the advocacy work I did last month gave me a bad crash, a terrible case of post-exertional malaise (PEM), that kept me from going to the rally in my city, which I really really wanted to go to. I did much less online advocacy this year than I did last, so I’d have energy to go. But nope. Even tho I got up that Saturday morning, and I got dressed, and we got in the car… I couldn’t make it. AND I could only speak in whispers that day, due to weakness. And it took me a couple weeks to get back to my extremely-low baseline. And now, 36 days later [June 15], my voice is still gone. That’s right: I still can’t speak. I can’t call doctors to ask questions, or schedule an appointment, or call my insurance; and I can barely communicate with hubs, who doesn’t understand what little American Sign Language (ASL) I remember.

And I’m angry no one seemed to know what to do to help me, not even my GP, and when I finally got enough voice to call a speech language pathologist for an appointment, they put me on hold for so long that their on-hold message/music crashed me and caused me great pain, and I had to hang up.

I’m also angry when patients are jerks to other patients, especially publicly. Especially to patients who are doing the hard work of trying to advocate for our illnesses. Don’t do that. Be nice to each other. Be civil. I’m angry that Jen Brea has gotten backlash for sharing her story of recovery from ME via CCI (cervical cranial instability surgery. I’m not going to link to such; I’m simply linking to her Medium page so you can read all the articles she’s written about her surgeries and path to recovery.)

So again, I’m not brave. I’m angry. And I’m gonna keep using my anger and my words to advocate and demand research monies and real help for the millions of us worldwide who have Myalgic Encephalomyelitis.

§ I don’t typically update my posts once I’ve written them, unless there’s an error, because I would never stop editing!, but in this case, I’m adding items to this list as I think of them, because this is a good reference I can send to people.

Now through June 30, all funds donated to the Solve MEcfs Initiative will be matched, up to $75,000, thanks to two generous donors!

Please donate

so I don’t have to live in silence and isolation and pain for the rest of my life!

In fantastic news, the U.S. Senate passed the ME/CFS Resolution while the House introduced a matching action! The bi-partisan resolution was led by Senator Ed Markey of Massachusetts and the matching resolution introduced the same week in the U.S. House of Representatives was led by Representative Zoe Lofgren of California. Read more on the SolveMECFS site.

In good news, I saw an ENT on June 6, and there’s a flappy thing on my vocal cords that is swollen, but nothing else is going on in there. But in bad news, my GERD might be back, and I’ll have a test next week to check how much acid is in my throat.

And, how cool is this? I was nominated for Best in Show: Blog in the 2019 WEGO Health Awards. That means someone thinks I’m a “patient leader”.

July 1-28, you can “endorse” me on my profile on their site, which is, as they say, “a way to give nominees a visual show of support.” Also, “In response to feedback from the community, the endorsement process helps select top Patient Leaders to move on to the finalist round. The three most endorsed nominees in each WEGO Health Award category will automatically become a finalist.” Now, I don’t expect I’ll be one of the top three most endorsed nominee in my category (in 2018, they received over 4,000 nominations!), but I would certainly appreciate the shout-outs and support!

If you have a minute to say why you think I should be nominated, go to my profile, then click the orange “add your nomination reason” button. You’ll have to pick the award you want to nominate me for (I’ve currently been nominated for blog, but you can chose whatever), put in the address for my blog (no idea why they are asking for it. again!: www.dsavannah.com/blog/), then type in your nomination reason.

(If you’re wondering who in the heck is WEGO health, according to their about page, “WEGO Health is a mission-driven company connecting healthcare with the experience, skills and insights of Patient Leaders.” This blog post explains How The WEGO Health Awards Work.)

Also, I’d like to issue a challenge to everyone who has a #ChronicIllness. On days when you feel absolutely horrible, on days you feel alone and sad, contact one of your fellow #ChronicIllnessWarriors and send them a note that you are thinking of them and how much you appreciate them. You’ll be amazed at how much better it makes you both feel.

Before you go:

I’ve never had ads on my blog, and never wanted them, but it’s expensive to have a website, what with the domain registration & hosting fees. And I haven’t been able to work in over four years, and I get no disability benefits – and my medications alone cost me more than $300 a month!

If you found this post useful or inspiring, please consider supporting me and my ramblings:

• with a $3 tip at ko-fi.com/dsavannah – or NEW! Thanks to the person who gifted me Kofi Gold, you can now pledge a monthly tip for me! I cried when I saw the first one!
• by donating via paypal
• or sending me something from my Amazon wishlist. (Note: I have prime, so if you don’t, and don’t want to pay for shipping, just contact me and we’ll work something out.)

Your support keeps me going, even in tough times. Thank you for stopping by my blog.

Also, if you would like to help terribly ill #MEcfs patients like me, please consider donating to the Open Medicine Foundation or SolveMECFSInitiative, both of whom focus on research and looking for a cure; or #MEActionNet, an organization that focuses on advocacy. Donate online with a credit card, giftcard, or paypal!