#now the post TB diagnosis pictures begin...

[itiswritteninthestarsabove]

[mandeebobandee]

I said I’d write a post with my experience with mental illness and here it is. I put it off for a while because I wasn’t sure how personal I wanted to get, or if anyone would be interested, but hey. It’s been bouncing around in my head for a long time, and if this helps me or anyone who might come across it, I suppose it’s worth it. I’m going to put a read more here so that this doesn’t kill people’s dashes, since I have a feeling this is going to end up being long and rambly, but...here we go.

I’m not actually sure when my first symptoms showed up. It’s possible that I had some form of mental illness almost as far back as I can remember? I remember being in preschool and having a fear of wetting my pants for an entire day, and no matter how hard I tried I couldn’t seem to get the thought out of my mind. In first grade, I remember being seized by a fear that I would start swearing at the top of my lungs in the middle of class. I didn’t, but it popped into my head, and that felt bad enough. A couple of times in 2nd/3rd grade, I had difficulty falling asleep because I couldn’t stop worrying about trying to get to sleep, and I would keep repeatedly counting out how many hours of sleep I would get if I fell asleep right then, and if it would be ‘enough sleep’.

So yeah. I always was a worrywart, it seems like.

I feel like I should note that I went to Catholic school from kindergarten through 2nd grade. I should also note that I’m fairly certain my experiences with religion shaped some of my first experiences with mental illness. This is not to say anything against anyone who is religious - I respect you and your faith. However, certain things I learned through religion...didn’t exactly help me, with how my mind worked.

In Catholic school, confession is a thing. You go in front of a priest and tell him your sins, and he gives you a way to seek penance for it. Usually repeating a certain prayer a certain number of times, or something along those lines. I dunno, it’s been a LONG time since I’ve actually done it. I’m agnostic now, so I don’t exactly go to church.

The reason I bring this up? 

My experiences when I was younger MAY have qualified as mental illness. I’m not 100% certain. What began near the end of 3rd grade? There is NO doubt about that.

It was Good Friday 1998. I was 8, soon to be 9. The reason I brought up my religious background is this - a religion related discussion precipitated my heardfirst dive into obsessive-compulsive disorder.

I’m pretty sure the comment was relatively harmless in hindsight, my mom making a comment about how Jesus died for our sins or something like that. All I know is that I suddenly found myself besieged by an overwhelming guilt as I thought about everything ‘bad’ I’d done in my life. Saying bad words, sneaking candy when I was 4 years old, all of it kept jumping to the forefront of my mind, and I felt like I had to confess it all to my parents as it came to my mind. I’m not sure how long this lasted...probably only a couple of weeks, honestly, but it wasn’t fun.

Also, the weirdest things became concerns of mine at that point. I had to make certain not to stick my middle finger out too far, or else I was afraid that I’d accidentally flip someone off, which I knew was bad. I didn’t want to say words like ‘wash it’ because...well, the end of the word wash combined with the word it sounded like ‘shit’ and ‘oh no bad word!’.

...I hate to say it, but this was only the beginning.

My mom and I were praying at one point at night when a really bad thought popped into my head. I was terrified, because what if it came true because I thought it while I was praying? And I didn’t really want to talk about it with anyone, because it was so horrible that I didn’t want anyone to know about it.

This continued for much of fourth grade. I was afraid I would hurt my mother. I didn’t actually want to, of course - I recognize now that these were what are known as intrusive thoughts, but there aren’t many nine year olds who know that now, let alone in the late 90s when I was experiencing all of this.

I recall being afraid to even touch knives, if that tells you anything.

I would also pray. By this point I recognized that what I was doing was ‘weird’, so I found ways to hide what I was doing. I would go into a room by myself and go through my routine, or I would do my daily ‘prayer’ in the shower.

...here’s why this was an issue.

I wasn’t just saying a quick prayer. I had an entire script memorized, that had to be said exactly the right way or I’d have to repeat it all over again. And it wasn’t a quick script either. And I often WOULD have to repeat it all over again. I recall at least one point where my parents actually made a comment about how long I spent in the shower, and the water grew cold with how long I spent in there. I didn’t tell them why, because I knew it was weird

That particular phase reached a boiling point one night when I was watching The Lion King. Here, I feel I should note that The Lion King was my favorite movie when I was younger. It came out when I was 5 years old, and I was Simba for Halloween in kindergarten. I had Simba and Nala stuffed animals, a Simba windbreaker with matching pants (yes, windbreaker..it was the 90s, okay?) that I took my school picture in, a Lion King casette tape, Lion King sheets on my bed...

You get the picture.

I bawled my eyes out during that movie, and while yes, I did often cry at certain scenes in that movie, for obvious reasons...this was different. This was almost hysterical crying, and my parents knew there was something wrong. They managed to finally coax me to admit my fears, and that seeing Simba accused of what happened to Mufasa in that movie was...well, it was a little too close for comfort.

Talking to my parents helped. I still had worries, of course, but my next big flare up didn’t happen until 5th grade.

Once again, the thing that set it off should have been something that didn’t affect me. It wouldn’t affect most people. 

A girl in my gym class cut her knee on one of those rolly scooters that you’d sit on and roll around on in gym class. Obviously not the greatest thing, but you wouldn’t think it would be something that would set someone off...would you?

Ahahaha. Yeaaaaaaaaah right.

To preface, some of this was due to ignorance on my part. I was 10, I didn’t know the details as to how the disease I was so afraid of was transmitted. I only knew that you could get it from blood, and there was blood on the floor in gym class. So then I started worrying that I might have gotten it on my shoes. Then, that anything my shoes touched could have gotten something on them. Then my clothes. Then...

You, uh, get the picture.

I was afraid that anything I touched would give me AIDS. X_X Again, I KNOW now that it doesn’t work that way. I also know that even with other diseases, those pathogens eventually DIE outside of the body, so you don’t have to worry about your shoes being contaminated with the same virus two weeks later. But, again, I was 10. I actually learned shortly after this the truth of how AIDS is spread.

Anyway, this was one of the points where my OCD was most stereotypical. I washed my hands constantly. Obviously my parents noticed, and they tried to poke and prod into WHY I was doing this. Once again, my shame and fear and recognizing that what I was doing was ‘weird’ led me to hide the truth to some extent. We’d watched Johnny Tremaine in class and my dad mentioned that after he watched that movie he’d been afraid that his hand would get disfigured like one of the characters’ in the movie’s hands did. So I claimed that I feared something similar, and that was why I was washing my hands.

I’m pretty sure, looking back, that he probably didn’t buy that.

6th grade came. My mom had surgery. My best friend had diabetes. Neither of these were their fault, of course, but both I’m fairly certain had an impact on my already anxious mind. I started worrying that I would develop diabetes like my friend had. Now, I was old enough at this point to understand that diabetes wasn’t contagious, so at least I wasn’t worried about contracting it from my friend. I was, however, afraid of contracting other diseases, so...yep, the hand washing continued. We also happened to have this lovely book of illnesses from the 80s that my parents bought with an encyclopedia set way back that I spent way too much time reading. Actually, reading that became one of my compulsions. There was an entry that I would read through every night before I went to bed. The same entry.

My mom wound up in the hospital with chest pains a couple of weeks after surgery. They sent her home with a diagnosis of acid reflux. It was 2 in the morning and they took me to a side room to see if I could get some sleep. I couldn’t. We were learning about the plague of all things and I couldn’t get the idea that plague bacteria could be lurking anywhere in that room out of my head, so...yep. Didn’t get to sleep until they released my mom out of the ER at 6 or 7 in the morning.

I started fearing heart attacks around this point. I would literally feel for my heartbeat several times a day, just to make sure my heart was still beating. 

Christmas that year was...stressful. My mom was still recovering from her surgery, there was family drama, my uncle’s girlfriend had a possible diagnosis of TB so everyone was paranoid of being around him because of THAT, my dad’s side of the family insisted on smoking despite the fact that being around smoke made me feel blah...

Still, that was a walk in the park compared to New Years.

We were invited to a neighbor’s New Years Eve party. Everything was fine until I walked in the door.

I still don’t entirely know how to describe the feeling that came over me. 11-year-old me summed it up as ‘I feel like I’m going to pass out’. I tried to continue as if everything was normal. I didn’t want to disrupt the party. The neighbor’s toddler daughter, who liked showing off for the ‘big kid’, wanted to show me a dance or something that she’d learned.

The feeling didn’t go away. I told my mom I wanted to go home, that I still felt like I was going to pass out.

We made it back home. I remember pleading with my mom to take me to the doctor, because I was honestly afraid there was something seriously wrong with me. The feeling eventually abated, but not without my discovering something quite interesting.

Remember that childhood illnesses book? When I read it, I usually stuck to certain communicable diseases that I was concerned about, or things like the diabetes that my best friend struggled with. My mom was looking through the book trying to figure out what was wrong with me, and started reading a definition that stood out to me. I don’t recall what all it said, and we no longer have that book (as it would be over 30 years old at this point). One thing I do recall was that she read something along the lines of ‘feeling like you’re going crazy or dying’.

It was under the heading of ‘panic attack’.

That New Years was the only New Years I can ever recall NOT staying up until or past midnight.

I ended up getting a fever a few days later, and in the midst of my fever, my delirious mind pounced on my fears and kept asking me ‘what if you really do want to hurt somebody?’ I was shaking uncontrollably, not realizing that I had chills and a fever, and ran into my mom’s room sobbing and telling her I thought I was going crazy. She felt my forehead and told me I was burning up.

You can understand why, when it was time to return back to school after Christmas break, I was uneasy as my mom pulled up to the curb to drop me off. I was afraid that I’d get a headache, or that I’d feel like I was going to pass out again, or any of the multiple things that seemed to be wrong with me recently. Of course, I had to pull up my big girl panties and still go to school, but...I started to become afraid to do things, out of fear that they would ‘set me off’, that something like what happened at that New Years Eve party would happen again.

And it did.

Not right away, of course. I didn’t walk into school and have it happen right away. It happened once in gym class. It happened at a school party. It happened when my parents were driving.

It happened twice in one day, at the beginning of 7th grade. To be fair, though, there were special circumstances that day. One instance was precipitated by a mental picture in my head of a plane crashing into our school, if that gives you some idea. Needless to say, even the adults seemed confused and panicky that day, and given how I was already..yeah, it wasn’t any surprise that 9/11 left me particularly frazzled. 

The summer between 9th grade and 10th grade was quite possibly the worst. I spent hours doing my various ‘rituals’ that I had to do each day. By this time, I was already getting involved with online fandoms, and every day before I could actually posted what I wanted to on the Harry Potter forum I was on, I had to post certain posts over and over again. By this point, I more than suspected I had OCD.

I actually mentioned it to someone on the board, who pretty much laughed and said. ‘You don’t have it. If you had it, it would be noticeable’.

...like it wasn’t? Did they think I was posting the same thing over and over again for fun? I was doing rituals until 1 and 2 in the morning for pete’s sake.

This was honestly the pattern off and on through high school. 11th grade was particularly awkward, as it began to affect my grades. Certain readings in American Lit would give me ‘weird feelings’, and I couldn’t bring myself to finish the assignments for them for that reason. 

The summer between 11th and 12th grade was when things hit a head. I developed a thing for straightening shelves in stores, and my dad was poking fun at me doing it at one point. I love my dad, but he can be particularly harsh when he teases, and by that point I was already in a bad position.

I burst into tears in the middle of Walmart. Not one of my proudest moments.

That said...it gave me the impetus to finally go to my parents about what was wrong. I knew I’d needed therapy for a few years prior to this point, I’d just never worked up the courage to talk to them about it.

The first part of the conversation actually went how I feared. My parents thought it was like the diseases I looked up as a child and would come into their room telling them I feared I’d get it (...ironically, I did that BECAUSE of this disorder, but moving on). 

I left the room crying and began to write out my experience year after year, much as I did here (though probably not quite as eloquently...I was 17 at the time, after all). Once my parents read THAT, they finally realized how much this was impacting my life, and agreed to take me to the doctor.

Not only that, but they confessed that they did similar things. Now both of them admit to having OCD to some extent, and it’s pretty darn obvious that much of my family struggles with anxiety and/or OCD...on both sides.

Sad thing is? It took until the millennials (me and my cousin on my dad’s side) and Gen Z (a cousin on my mom’s side) before anyone actually sought help for any of this. X_X 

I’m not going to pretend that I went to therapy and things magically got better. Therapy did help. I stopped therapy when I was 19, because my therapist was about to have a baby. I never went back to see her after that, figuring I was doing better at that point.

Of course, the ensuing decade after that was full of ups and downs.

2016 is probably when things began to get extra difficult again. I began to experience tremors. I would get dizzy/have palpitations. My doctor sent me to see a cardiologist and a neurologist.

They ran their tests, determined there was nothing physically wrong with me. The tremors, dizziness, and palpitations were new manifestations of my anxiety. At some point (not 100% sure when), I also gained a diagnosis of GAD.

Last year, I finally began to see a therapist yet again (the 2017-2018 flu season scared me particularly badly, and I still have a paranoia because of it), and started a new medication. Has everything gotten completely better?

No, but it has improved some from where it was prior to that point. I’m still working on it, and I’ll probably be working on it in some way, shape, or form for my entire life.

But hey, at least I can be more open about it now. And I know that I’m not alone, and that makes a huge difference as well <3

[khalilhumam]

More Harm Than Good? The Net Impact of COVID-19 Policies Is What Matters for Health

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New Post has been published on http://khalilhumam.com/more-harm-than-good-the-net-impact-of-covid-19-policies-is-what-matters-for-health/

More Harm Than Good? The Net Impact of COVID-19 Policies Is What Matters for Health

Several groups have modeled the impact of COVID-19, and strategies to slow or halt its spread, on infections and deaths, including Imperial College London and the London School of Hygiene & Tropical Medicine. While their specific predictions vary based on data, policy assumptions, and modeling scenarios, they all paint a grim picture on the number of COVID-19 deaths ahead. And yet, deaths of COVID-19 patients are not the only deaths to consider when weighing up the impact of this disease, nor when assessing prospective policies or the success or failure of mitigation and suppression responses. This is the first in a series of blogs in which we’ll focus on non-COVID-19 excess deaths caused by the response to COVID-19, part of a larger project at CGD to help policymakers minimize the indirect health impacts of the pandemic.

A major gap in current models

The modeling team at Imperial predicted that an unmitigated, worst-case scenario in Africa could lead to 2,483,000 deaths, compared to 298,000 deaths in their best-case, early and sustained suppression scenario; thus 2,185,000 COVID-19 deaths could be avoided according to their predictions. This week the medical journal BMJ Global Health published a paper authored by a team from WHO’s Regional Office for Africa. Based on more and better data, and after most countries in Africa have introduced stringent policy responses, this report predicts that between 83,000-190,000 people could die of COVID-19 in the first year of the pandemic if containment measures fail. While these new predictions are over ten times less than the Imperial projections, 190,000 excess COVID-19 deaths is a substantial toll. Still, what’s missing from these numbers are the people who will die from the many indirect impacts of the COVID-19 response.

Indirect consequences of the pandemic – specific disease areas

Many groups have recently begun publishing predictions of non-COVID-19 excess mortality—or what some commentators call “lockdown victims” or “collateral.” Some of their findings include:

Using the Lives Saved Tool, Johns Hopkins University reported that across 118 low- and middle-income countries, the increase in child and maternal deaths will be devasting. Based on a range of plausible scenarios, the authors estimate that there could be as many as 2,300,000 additional child deaths and 133,000 additional maternal deaths in this first year of the pandemic as a result of unavoidable shocks, health system collapse, or intentional choices made in responding to the pandemic.

A report by the London School of Hygiene & Tropical Medicine found that for every one excess COVID-19 death attributable to infections acquired during routine vaccination clinic visits, there could be up to 549 deaths in children prevented by sustaining routine childhood immunization in Africa.  Unfortunately there are countless reports of the various ways in which the ongoing pandemic is disrupting both routine immunization and immunization campaigns.

An HIV modelling report, convened by the WHO and UNAIDS, used five models of HIV epidemics to estimate the effect of various potential disruptions to HIV prevention and treatment services on HIV-related deaths and new infections in sub-Saharan Africa over one- and five-year periods. It found that a six-month full interruption of antiretroviral therapy (ART) supply would be expected to lead to excess deaths over a year which are more than the total current annual number of HIV deaths. In sub-Saharan Africa this amounts to possibly over additional 500,000 HIV deaths. Similar disruption would also lead to a doubling in the number of children born with HIV.

The WHO’s Global Malaria Program considered nine scenarios for potential disruptions in access to critical malaria interventions in 41 countries. Under the worst-case scenario, in which all insecticide-treated net campaigns are suspended and there is a 75% reduction in access to effective antimalarial medicines, they reported that excess malaria deaths could approach 400,000, a more than 100 percent increase in the deaths reported in 2018.

The Stop TB Partnership, in collaboration with the Imperial College, Avenir Health and Johns Hopkins University, estimated that a three-month lockdown and a protracted 10-month restoration could lead to an additional 1.4 million TB deaths during this time between 2020-2025.

The broader impact of COVID-19 on health systems

While these studies are useful—and we have not listed them all here—they are issue-based, with no attempt to look across the full range of essential health services that are being disrupted. Furthermore, adding up such standalone disease- and population-specific analyses could result in double-counting of excess non-COVID-19 deaths (for example maternal and child health and malaria, or child health and immunization). There has also been a conspicuous absence of modeled estimates for non-communicable diseases in low- and middle-income countries. This no doubt reflects the absence of a funded modeling consortium. By contrast, the Bill & Melinda Gates Foundation currently supports modeling consortia for HIV, TB, malaria, neglected tropical diseases, vaccines, and nutrition. However, in high-income countries such as the UK, early estimates of the cost of the policy response are emerging and seem equally devastating: a six month delay in diagnosis for new cancers could match almost half of the life-years lost due to COVID-19. In 2017, the Global Burden of Disease project estimates that there were around 7,700,000 deaths in sub-Saharan Africa. Of these, 400,000 were from transport and other unintentional injuries. Lockdowns will result in fewer deaths from traffic accidents. Less outdoor pollution should similarly lead to less deaths, but those gains may be offset by greater exposure to indoor air pollution. But an increase of just 1-3 percent in all-cause mortality (excluding injury deaths), attributable to disruptions in the delivery of routine health services, over the course of a year, gets us to the new WHO AFRO estimates published this week: 73,000-219,000 non-COVID-19 deaths vs. 83,000-190,000 COVID-19 deaths. This back-of-an-envelope calculation should offer pause for thought, particularly as it does not consider the inevitable health effects of the global recession. Nor the effects on human capital in combination with school closures. “An increase of just 1-3 percent in all-cause mortality (excluding injury deaths), attributable to disruptions in routine health services, would lead to the same number of non-COVID19 deaths as the new predictions of COVID-19 deaths published by WHO AFRO. This back-of-an-envelope calculation should offer us pause for thought.”

What are the alternatives?

We recognize that an unmitigated outbreak across LMICs would result in excess non-COVID-19 deaths across the whole of health due to a combination of factors including reductions in seeking care, illness and death among scarce health care workers, and overwhelming the few secondary and tertiary care facilities (a failure to “flatten the curve”). Lockdown policies will have similar consequences through disrupting supply chains, redirecting people and money to the COVID-19 response, and preventing people from seeking and accessing care. But it should not be a choice between doing nothing and lockdowns. It should be about appraising different policy options using a more holistic approach. Characterizing such excess deaths alongside lives saved from a reduction in COVID-19 transmission seems therefore to be of the essence. However, we are not aware of any attempt to date to look across these issues to take a broader health system’s perspective. Doing so would enable us to ask, “Are stringent COVID-19 policy measures in LMICs doing more harm than good?”

What is needed now

We believe that the appropriate response to this pandemic calls for nuanced, evidence-informed, and continuously refined policies. The widely modelled choice of do-nothing vs. complete shut-down is a dichotomy unhelpful to policymakers as it is both impractical in many contexts and potentially harmful, as studies are beginning to highlight. We need commonsense, context sensitive policies which openly consider the inevitable trade-offs between COVID-19 and non-COVID-19 deaths. These have been proposed and should be considered as governments plot a course through this pandemic. We list some of the suggestions in the box below, but note this list is not exhaustive.

Alternatives to total lockdown:

Self-isolation of symptomatic people

General physical distancing (to reduce probability of transmission per contact)

“Looser lockdown” coupled with scaling up of COVID-19 treatment and testing capacities

Shielding of high-risk groups (including resettlement or quarantine with limited contact and basic needs support)

Informational interventions using phones and local/national broadcast

Public health promotion in communities (work with local influencers, community health workers promotion of hand hygiene and respiratory etiquette)

Special measures in informal settlements (handwashing stations, quarantine spaces)

Regulation of high-density markets to promote physical distancing

Local approaches to mobility restrictions (limit large scale movement, require face masks when travelling, adopt local approaches to containment)

Sources: Van Zandvoort et al., Khan and Roy, Adam et al., Inter-Agency Standing Committee

Excess deaths during the pandemic are an unintended consequences of the response to COVID-19, but they are entirely predictable based on past pandemics and other natural disasters. Estimates of the net health effects and trade-offs of non-pharmaceutical interventions ought to have informed governments’ responses including, in many countries, some of the strictest limits on movement ever seen. They are as important today to inform governments as they consider the range of policy course correction and exit options as well as responses to future waves of virus transmission. Over the coming weeks we will share the findings of a scoping review (see here our call for resources and here for a teaser of what we’re finding) that maps data and evidence to a conceptual framework to help understand the multifaceted nature of the indirect health effects. We will also share a simple tool to support the estimation of indirect health effects, in terms of excess non-COVID-19 mortality (and also reductions in non-COVID mortality, e.g. road traffic deaths). The tool will allow users to estimate the indirect health impact across different services, and compare excess non-COVID-19 deaths as a result of COVID-19 public health measures and COVID-19 deaths averted under different scenarios. It can therefore be used to identify which non-COVID-19 services are most essential to maintain during COVID-19 to mitigate excess non-COVID-19 mortality and inform relevant policy responses. Finally, we will be launching a series of country case studies in order to document these trade-offs and will provide updates throughout this series.