Afflicted

Afflicted

Afflict (verb)
(of a problem or illness) cause pain or suffering to; affect or trouble

Women being diagnosed with hysteria as a result of mental illnesses didn’t disappear from the Diagnostic And Statistical Manual of Mental Disorders (DSM) until – 1980! Yes, 1980. Hysteria was basically the medical explanation for everything that men found mysterious or unmanageable in women. And it continues to be a synonym for over-emotional or deranged behavior.

Some of you may be familiar with the new Netflix series Afflicted. I first came across it on Twitter the week before last as it was getting panned by the chronically ill community, including one of the people who took part in the “docuseries” who is living with an extreme form of myalgic encephalomyelitis (ME). ME often starts as a result of trauma, like a car accident. Some interchange it with chronic fatigue syndrome, but it is more severe, often leaving people bed ridden for months and years.

I’m assuming these people were approached by the producers who said it would help to raise awareness of these diseases that could be considered “all in your head.” While I haven’t finished watching it yet, I fall somewhere in the middle that a few may indeed be in their head, but others for sure in their body. Either way, people need genuine help. I remember having someone fairly close to me say, “it’s almost like you’re trying to find something wrong.” No, I KNEW something was wrong, and it was actually typically wrong for MS (weakness & numbness).

As someone living with multiple sclerosis a chronic (and sometimes acute) disease, I can appreciate how people “just want to feel better.” On the other hand, it’s also hard to see these people spending millions of dollars on avenues that lack scientific research. But you also can’t win in these situations, because people tell you to do “something,” but then when you do, it’s wrong unless it’s Western medicine. And since these diseases and disorders are so new, what Western medicine should it be? I do question why some of the people featured have turned down mental health support, especially given the whole mind/body connection.

Just like with hysteria in the last century, we have moved into a time of unknown illnesses. There is no doubt we are all exposed to more environmental factors, than even I was as a child 40 years ago. The show talks about electromagnetic sensitivity, as I look around my apartment to see: two laptops, a monitor, two TVs, wifi, cable modem, wifi speaker, and a mobile phone, it does make me wonder for a moment if the electric impulses I feel MANY times per day due to the paresthesia aren’t enhanced by all of the devices I have in a small space. Keep calm, carry on.

Several people in the series suffer from multiple chemical sensitivity. And around 25% of the general population reports essentially being allergic to life. All of the perfumes, mold, scents, cigarette smoke, animal dander, oils, gas, etc. can be classified as MCS. Those migraines you’re getting, asthma, allergies, sinus infections, strep, and the list goes on, could be classified as MCS depending on what you are exposed to on a daily basis. And we are also just delving into the gut microbiome in research, which is more and more starting to be attributed to the uptick of autoimmune diseases (and pointing towards the overuse of antibiotics). Also keep in mind that the better diagnostics get and the longer people live, the more likely there are to be diseases we’ve not yet heard of, just like a lot of cancers or cardiovascular diseases 40 short years ago.

As if having multiple sclerosis isn’t enough, I’ve also had allergy induced asthma for 45 years. Although the asthma is controlled by avoiding animals, the allergy/sensitivities to scents has grown exponentially since the MS. People always say, well try organic, but what most people don’t understand is there is no such thing as completely unscented. Organic doesn’t mean unscented, since herbs also have scents, and for me it doesn’t make a difference between the two, a scent is a scent. But ironically, the allergies bother me less in the city where the trees are fewer, than in the suburbs or country. Perhaps my immune system has adjusted to city life better. And also my heat intolerance has grown over time. I live in an apartmentcicle. And wherever I go, if it’s not freezing cold, I for sure have symptoms or pseudo-exacerbations, and while cooling down helps them go away, I often wonder what damage is happening in the process all during the hot months.

I felt compelled to do this post, as a result of this series, to say, while from the outside you might think an issue is “all in someone’s head,” it doesn’t make it any less of a health issue. And as a family member, friend, partner, child, as frustrated as you are, imagine feeling like shit 24/7 and not having anything to make you feel even a little better? So the next time someone turns the thermostat to meat locker temps, put on warmer clothes and be happy to spend time with them.

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Gratitude

Gratitude

Gratitude (noun)
the quality of being thankful; readiness to show appreciation for and to return kindness

Tonite was a typical summer evening in NYC, aka hot & sticky. I had planned to attend a great concert, but wasn’t sure my body would hold up to being outside in the humidity, and while it’s not pleasant, I haven’t been giving my body enough credit lately. To set the stage for just how humid it’s been? I have pretty much straight hair and even I’m sporting a top knot these days because my hair is going “poof” the minute I’m outside. So, yes, it’s HUMID. So done with summer!

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I pushed myself to go and was so glad I did. For most of the show the humidity went away a bit and I got to enjoy it. And then when it did come back again, by that point my body was acclimated and I was able to get up and dance for the remainder of the time.

Looking around at the crowd and the NYC skyline and the audience enjoying the music, a wave of gratitude came over me. I’m grateful to have wonderful family and friends in my life. People who both cheer me on and tell it like it is.

I’m grateful that I feel healthier than I have since the diagnosis nine years ago (and 10 this month since symptom onset). I’m grateful to have access to medicine, fitness, and doctors that are part of keeping me healthy (I wish everyone did, but a topic for another time). I’m grateful that I have a body that I’m feeling a little less like its betrayed me or I’ve betrayed it.

I’m grateful to live in a city that cares about protecting everyone, warts and all. And I’m grateful to be in a position to give back to my community and organizations that need it, especially in the current political climate (literally).

Keep on keeping’ on…

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