This is your periodic reminder that ambulatory wheelchair users exist. Many folks think wheelchairs are only for those who can't walk at all, or folks who can only take a couple steps.
Wheelchairs and electric scooters are used due to pain, weakness, balance issues, orthostatic intolerance, etc.
Doc: Are you sure? You look young. Maybe it was your appendix?
Me: I know the difference between my appendix and my WOMB.
Doc: Orders pregnancy test anyways
We really need to discuss how AFAB patients get treated by many doctors. If you need to do a pregnancy test on everyone as a matter of course - then just do the test. But don’t waste time arguing with me about whether I know the difference between an appendix and my LITERAL womb when I’m having a life threatening cardiac emergency.
The horrible things we as disabled people are pushed through "because we're able to" do them, is incredibly concerning.
It so often pushes us into survival mode, where getting through the thing is our only focus, and it DEEPLY damages our health and wellbeing in the process.
We deserve the accommodations we need to actually live, not just survive, and as far as possible, thrive and be happy.
I have to wonder if part of the reason #LongCOVID isn't considered a bigger problem is that if you are afflicted, you are immediately "the other" by virtue of having #ChronicIllness. At least in America, any long-term, incurable issue, especially one that limits or prevents work, makes you less valuable/desirable/profitable. So even though millions are suffering, by definition those who suffer are not socially valuable enough to focus on.
I mean, we don't even care about pregnant people, so.
People keep shouting that if disabled people can’t cook or clean they should be institutionalized. Apparently accommodating us so we can live independent lives is angering others. Setting aside how awful many care homes are - do you realize there aren’t nearly enough beds?
I get that many ppl seem to want to completely disappear us from society. Seem to think we would be “better off” institutionalized even though many homes are dangerous places for disabled ppl. Even IF they were all sunshine & lollipops …do you think there’s enough of them?
Do you think they accept people of all disabilities? This idea that we should all have families or full time caregivers to support us is nonsense. It’s unrealistic and in many cases unnecessary. Many of us can & do learn to adapt on our own with part time help where available
The reality is we don’t have enough long term care beds to support everyone who’s chronically ill. Many places won’t take you until you’re a certain age. Many deny if you’re too unstable or don’t have rehabilitation goals. I know. I tried to find one & was repeatedly denied.
Stop assuming there’s some society wide program that places disabled people in homes that suit their unique circumstances. Many congregate settings are vectors for disease and neglect. We have to beg for access to places that often make us worse & reduce our quality of life
When you’re tempted to shout that we belong in a home - consider if it’s where YOU would want to be. Also look around - many countries are rapidly expanding their euthanasia programs to include disabled people with non terminal illnesses. Why do you think that is?
We are seeing rising disability numbers due to Covid - and the sad fact is we didn’t have enough supports for disabled people before the pandemic. We certainly can’t support the influx that’s currently occurring. So we are offering DEATH instead. Dead people cost less money.
I know folks are stuck in denial. They don’t want to accept the society wide risk associated with unmitigated COVID spread. But we are begging you to try. Try and think critically about WHY governments are expanding euthanasia programs.
Believe us when we tell you the dire lack of support available. We aren’t shouting about this because we want sympathy or enjoy complaining - we’re shouting because we can see the writing on the wall. We know our systems can’t support this much disability & people will suffer 1/2
A un moment il va falloir dire les choses : tout ça est un ENORME SCANDALE SANITAIRE avec des falsifications et des conflits d'intérêt qui ont littéralement détruit la vie de dizaines de milliers de malades (et ça continue)
"Ed Yong, an award-winning science journalist who widely covered the pandemic, recently launched The Spoonbill Club to provide community—and an accessible hobby—for folks with long COVID."
So, the guy who called me with the surprise job interview was also quite irritated about disability accommodation stuff.
He asked if there was anything stopping me from working certain days or times. I responded that there wasn't, aside from the fact that I'm only cleared to work 15 - 22 hours a week by Centerlink.
He asked if that was counted across a week, fortnight, or month.. so could I work 40 hours in a week and have 3 weeks rostered off. I said that I thought Centerlink would allow that, but it's not something I was physically able to do.. which is why I'm only cleared for that many hours.
He explained that shifts run from 7.30am through to 1pm, and then 1pm through to 6pm.. and asked if I'd be able to work a double shift if someone didn't turn up or if they needed the extra help. I explained that I wouldn't be able to do that as a regular thing, but possibly could very occasionally. It depended on the type of work that it involved.
He said that while it was a receptionist job, it was 'very physically demanding', and that it involved being on my feet most of the day. I asked what "on my feet" entailed in this context. I explained that I could walk around for hours but that standing still for extended periods (honestly, standing still for more than a couple of minutes is painful) causes my back to lock up because of injuries sustained when I was a nurse. I have bulging and herniated discs, degenerative disc disease, and vertebral compression fractures.
I asked if sitting was an option, he said that there was a stool, but that using it meant that I wouldn't be able to pass clients the eftpos machine over the reception desk and wouldn't be able to get their details or greet them properly. He said that there was a fatigue mat to stand on.
I explained that I had a disability support officer at my employment service provider, and that I'd be happy to get her to call him. He said that he'd call her and never took her number.
The icing on the cake for me is that he's a chiropractor, and this was a job as a receptionist at a chiropractic clinic - so they're meant to know about disability and pain management, as well as know how damaging standing still for long periods can be.
This is the attitude when dealing with disability and disabled people.
He's legally obligated to provide "reasonable accommodations", but he'll just find another reason to not hire a disabled person.
*yes, I know that chiropracty is a dangerous sham. I need to apply for jobs because I'm poor, disabled, and on benefits that don't cover even a fraction of my living costs.
I got an official diagnosis yesterday, at the age of 52, for a genetic disease that I’ve been manifesting symptoms of since the age of 5.
I have been ignored and gaslit by the medical community for 47 years.
It only took one doctor to say “your body isn’t responding the way I’d expect, let’s find out why” to get the process started and I am so very grateful for that doctor! But it also took more than 40 years to find that doctor and that’s insane
Today is the 2 month anniversary of the death of my partner, Beth Mazur, and it's also the publication day of an NIH study on ME/CFS that I took part in as a patient & that Beth was involved with as an advocate. She supported me during the 21 days I was at the Clinical Center & pushed the scientists to work faster & do better. I'm very happy reporter Jennifer Couzin-Frankel mentions Beth in her #Science article today.
Does anyone in the #ChronicIllness#LongCovid and/or #spoonie community on Mastodon use an electric bicycle as a mobility aid to get out and about?
I would love to be able to go outside more, but the price of electric bikes is fairly prohibitive. It would need to be folding so that I can be rescued if necessary 🙃 Have you found the outlay worth it?
Any helpful comments from e-bikers gratefully received
"It’s the greatest medical scandal of the 21st century. For decades, patients with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) have been told they can make themselves better by changing their attitudes. This devastating condition, which afflicts about 250,000 people in the UK, was psychologised by many doctors and scientists, adding to the burden of a terrible physiological illness."
I see far too many chronic illness patients being dismissed from the ER for “faking”. Is there not a duty to run tests to ensure something isn’t missed before discharging someone as a fake? Given the consequences could literally be their life?
This happened to me years ago -
I had major OB GYN surgery and a week later was getting worse not better. Weak, in pain, swollen, loss of appetite etc. Went to the ER and was treated like a “nuisance” and asked what I “expected” after major surgery. I tried to explain I expected to improve a little each day - and I was clearly decompensating.
They decided I was faking and sent me home. This repeated 3 times over the course of a week - each time I was sent home without any tests.
Finally my then boyfriend took me in for a 4th time - literally carrying me to triage because I could no longer stand up. They got angry and said “we’ve already told her there’s nothing we can do.” He said he wasn’t taking me home to die. He demanded they run tests. The situation escalated but they finally acquiesced to the most basic blood work and an ultrasound. I’m incredibly fortunate they listened to him - and incredibly angry it took a man causing a scene to get me care.
Turns out I had a hugely elevated white blood count, a ferritin of zero and a hemoglobin of 63. I had a massive infected abscess in my abdomen that had been caused by an internal bleed left unchecked for weeks. I was rushed to emergency surgery and needed multiple rounds of blood transfusions and spent weeks in the hospital.
Had I gone home - I more than likely would have died. Had I been alone - I would have died. It should never be this way and from what I’m hearing from other patients it’s only gotten worse since Covid.
Please listen to your patients. We KNOW our bodies. Listen to women & marginalized individuals… don’t make us bring someone else to tell our story. Listen to people who come back over and over again - they clearly need help. Have some compassion and don’t assume someone is faking just because you don’t see an obvious issue.
“Congrats - you’re old! Maybe this year you will try and be normal again.”
This was a birthday message I received from a relative. They’re referring to my disabilities and to my Covid caution. They consider both “abnormal”.
I’m sick & tired of the insinuation that being disabled means we’re abnormal. That we simply need to “try harder” and we will no longer be sick - or that our illnesses are a personal failing. Temporarily abled people always seem to think it’s OUR fault we are sick.
This assumption stems from people being unable to comprehend that certain illnesses can be permanent but not fatal.
People tend to see illness as two pronged - you get sick and die or you get sick and recover. They don't understand the spectrum that lies in between.
As a result if you become chronically ill - people may be supportive at first but that support wanes when you don't get better. They assume if you're not improving and you haven't died that you're either faking, not really "that sick" or that you don't want to get well.
It's incredibly hurtful considering most chronically ill people spend the vast majority of their energy trying to be well. We do so much to try and retain or improve our baseline - but most of it is stuff others will never see. Compromise & sacrifice are daily occurrences.
The reality is that you can't "try harder" your way out of chronic illness. If you could no one would be sick. We try very hard - but our bodies aren’t well. Just because something doesn't kill you doesn't mean it won't debilitate you and rob you of your quality of life.
I know that's unpleasant for many people to think about - but looking away & refusing to acknowledge our reality doesn't change our situation. It just hurts us and lets you remain in denial. As for faking? Most people are trying to fake being WELL.
Putting on a happy face to make others more comfortable. There's no benefit to faking disabilities. It's a hard life with very little support & many cruel comments like the one I received.
Finally let's consider the word "normal". This person was referring in part to my illnesses (as they see them as an abnormality) and in part to my COVID caution which they see as nonsensical & unnecessary.
Disabled & chronically ill individuals are not abnormal. Health does not equal normalcy.
Health is a temporary state for everyone - not a bar to measure one's worth or commonality with others. It's discriminatory, ableist and cruel to suggest we are somehow abnormal.
As for the Covid caution - I look around at what we are doing and can't understand how anyone could think it abnormal that I'm trying to avoid catching (and spreading) this virus. When did it become "normal" to catch bugs all the time?
When did we decide it was "normal" to throw away our health, the health of the elderly, vulnerable and children? When did we stop caring for other people? We have become a society that looks down on people trying to protect themselves & others. That's ANYTHING but normal.
I don't think anything about the way society at large is responding to covid is “normal" but if it IS? I don't want any part of it. I'm proud to be someone who still cares about what's left of my health. Who cares about the health of others & breaking chains of transmission 1/2
This attitude that chronic illness is a moral failing is the one that hurts me the most. People seem to feel it more strongly since Covid. Those who know me know how healthy I was… until I wasn’t. Disability can & does strike everyone - you can’t make yourself bulletproof.