Reluctant Parent of an Unruly Medical Condition

I went to happy hour last night. That shouldn’t be such a statement, but it became one when I realized I hadn’t gone to a non-work happy hour in forever.

I am lucky to have all kinds of friends – single, married, divorced, with kids and without. On the way home I found myself asking a question I had heard from most, if not all of the parents: where has my social life gone? My job didn’t require overtime, and this blog isn’t overly burdensome. No, it wasn’t those. It was the giant monster-baby in the room – my condition. And that’s exactly what it was. My monster, which had seemed manageable in adulthood, had regressed into a big baby. Before it had been something of a companion, now it was somewhere between an infant and a toddler. I have to feed it. It wakes me up in the middle of the night, interrupts grown-up activities, and acts out when ignored. I don’t even get baby hugs to balance the frustration (Just because I didn’t want kids doesn’t mean I’m not close to several. I know the value of a good baby hug, even if it is a monster-baby.)

Like so many other chronic conditions, this one can just suck your time and energy. Even before I went off the rails of my regimen, I spent hours a day exercising, logging food, and meal planning. I sacrificed an entire half of my weekend every week to make sure I had healthy meals for the week. And if my control didn’t fall into the right range, the first symptom was exhaustion. Who wants to go out when you can barely make it through the work day?

Time and energy aside, I had another issue many parents – and chronic patients – experience. When parents’ focus changes to their kids and when people who weren’t sick before suddenly are, sometimes people disappear. They don’t know how to fit in to their friends’ new reality, whether it is a baby or a condition. They don’t know what to say. I didn’t really notice when I needed all the time I could get to wrestle myself back in the right direction. But as I have gotten better, I have realized that several people I used to see regularly have disappeared -- complete radio silence for six months or more. I can honestly say that’s never happened before.

Turns out I’m the communicator. With a few notable exceptions, I’m the one always reaching out to friends to see how everyone is doing, to initiate plans to hang out, and even verify that they are still free for whatever event it is. As I struggled, I had even less time and energy than usual, and my outreach fell by the medical wayside and I lost touch with many of them. I reached out to the ones I missed and let go of the ones I didn’t.

Perhaps it was a blessing. As with everyone else who consider themselves spoonies, my time and energy are very limited. Maybe I was wasting it on people who weren’t true members of my support network when I needed them. But that left me with just a handful of options to get myself out of my apartment, and social isolation can feed the negative emotions I was pulling myself out of.

For parents of human babies, this kind of gap is often filled by other parents, with whom they now have a lot in common. It’s a little harder to find the other parents of monster-babies. Can’t really tell by who’s pushing a stroller, and I know most of my existing friends don’t have one. I’m working on that, trying to expand into my local patient advocate community. Until then I will stick to the ones who are willing to support me while I try to corral my tantrum-throwing monster-baby and trek back to my life.

When A Word Is More than Just A Word

Language is important. Every issue, situation, and event has language to communicate the story around it. Healthcare as an issue is no different. For example, “chronic illness” is a common hashtag, but you will rarely see the “illness” part used in my posts. That is intentional. I prefer "condition". There are negative connotations like victimization and helplessness that come with "illness". I try not to write to that.

Language may be part of what's wrong with the discussion around health and healthcare. During the last presentation at the Lown Institute Conference this year, Dr. Viktor Montori pointed out that we talk about healthcare as an “industry.” It’s such a cold, harsh word to describe a world whose goal is something as vibrant and vital as life. As Dr. Montori said, if doctors are not treating patients with kindness and care, they are missing the point.

I agree, and I am lucky that all of the doctors I see more than annually do treat me with care and kindness. But I would like to take Dr. Montori's concept a little farther – to the insurance companies, researchers, and yes, the politicians.

Healthcare is unique in the pantheon of political issues. There is no other that poses inevitable mortal risk to so many, which gives it intimacy and urgency. When we were going through the attempted repeal of the ACA last year (twice!), I stayed up to watch the votes because I would not be able to breathe easy until I was sure of the outcome. Even now, I wonder whether those in the administration who continue to chip away at it or those in Congress who won't bring stabilization bills to the floor consider that they are literally sentencing theirs or their boss's constituents to death. People die when they can't get the medical treatments they need.

I know I’m using harsh language, but this is reality and to use more diplomatic language is to lessen that reality. And when people are dying, what right have we to make it easier on those making such impactful decisions?

I think we can change that language. George Orwell said, "But if thought corrupts language, language can also corrupt thought."

He was right. Language is powerful. The words we use reflect how we think. They can reveal whether someone is an optimist or a pessimist, their unconscious biases, and even where they've lived.

If we change the language we use to discuss healthcare, we can change the way we think about it. We can make it so that the people who make the decisions that affect our lives on such a fundamental level start seeing us not just as a policy or the price of a drug, but as us – people just like them, with lives and families, triumphs and setbacks, who feel love and hate and fear and curiosity. They are us but for faulty biology. If they can realize that, we will find their empathy, and empathy is what creates common ground.

It's going to take a while. The Oxford English Dictionary usually waits for 10 years of evidence of usage before it adds a word to the dictionary. But as many of us as there are, and as prominent an issue as healthcare is, I don’t think it will take that long. We should start small, maybe by deleting “industry” from the discussion. If we can stop talking about it in terms of profits and losses, we stop thinking about it in terms of profits and losses. Which might open the door just enough for empathy to fill the gap.

How Many Eggs in Your Basket?

I am one of those people who puts all their eggs in one basket. The more important the issue or opportunity, the more laser focused I become on the one path I want to take. I get all spun up and excited, whether it is likely to work out or not. Sadly, most situations seem to end up the latter. Like the latest one.

For Type 1 diabetics, there are a lot of elements to control. There are also a lot of options to choose from: long-acting and short-acting insulin, separate or mixed; blood sugar monitoring devices, either by finger (or other body part) prick or continuous glucose monitor (CGM); and insulin delivery systems, vial and syringe, pump, or even an inhaler.

I have never been one to pursue the latest gadget as soon as it comes out. I don't like to be the guinea pig, and if others are willing to weather the glitches before I have to, more power to them. It took a long time for my doctor to convince me to get a pump, but that was the only major change I made from the basics chosen for me at diagnosis. I tried a few CGMs, but they never worked, and I was happy with the regular finger prick method. Until recently, that is.

My recent detour from my regimen has resulted in progressively worse control, and I was starting to feel desperate, mostly because I no longer understood how my body worked. None of the biorhythms I had learned over the decades applied anymore. When one of my providers suggested a six-month-old technology that would intuitively keep my blood sugars in a good range, I dumped about two dozen eggs into that basket. It would be easier and quicker than any other option.

Once I made the decision to go forward with the combination pump and CGM, I wanted it now, which turned me into a bit of a Ms. Hyde. I am not entirely proud of how I handled some of the communications involved, but everyone came through for me (shout-out to Blue Cross Blue Shield CareFirst Administrators, who approved my new device in less than 24 hours even though I had six months on my old pump warranty. Never thought I would say that.).

I spent a few hours getting trained on my new device, setting it up and navigating it, putting all the pieces together and putting them in the right places on my body. And then, and then . . .

Not once did it occur to me that it wouldn't work.

Even though not one of the previous attempts to use a CGM had worked, I just couldn't accept that it wasn't working. I tried for over a month, tweaking the tech, moving the glucose sensor, but the CGM just wouldn't read accurately, and even when it did, the pump couldn't keep up with its readings, so my blood sugars remained high.

Well, what now?

Cheat, that's what, at least as much as I needed to. If that word is uncomfortable, think of it more as making my own rules, something at which I excel.

I moved the glucose sensor to an area on my body not approved by the FDA and turned off the artificial intelligence (AI) part of the tech, which was supposed automatically adjust my base rate insulin. Suddenly the readings, while still high, were looking a lot more accurate, so I let it run another week to make sure it wasn't just one accurate sensor. (It wasn't. ) Well, that was exciting. But when I tried to turn on the AI again, the whole thing malfunctioned, including the sensor. Not so exciting.

I theorized that the problem was either that the AI was based on information I had entered that no longer applied or that the pump itself was broken, but no one at the manufacturer knew enough to help me figure it out. My only option was to go back to basics, basics I hadn't needed to employ since my first pump in 2001. I started running fasting tests to figure out what my true insulin dosage should be.

And that's where I am now. If I got it right, I will try talking again with the manufacturer to see if they can answer my questions about why the AI doesn’t work when all the other parts do. I still hope I will get to use the AI eventually. It sure would make life easier. But for now, I will keep the two halves of my new device separate: one half proven tech upgrades (the CGM) and one half methods that have been around since the first injections (manual insulin calculation).

So please, try not to do what I did and assume that every new device will be the only solution to problems that have been effectively addressed for decades. Keep an open mind and see more than the easiest path. I wouldn't want anyone else to end up with the disappointment of a basket of broken eggs.

Some Nights

"Some Nights" by Fun. (2012) 🎶

Not to be morbid so soon after my post about fear, but for a long time, I was fairly sure I would die before I turned 60. This was one of the cornerstones of the overly strong mental defenses I developed in my teens and made insurmountable in my 20s. What was I supposed to think with all the diseases I had, including kidneys that only operated at about 50% at the age of 29? And if that were true why bother? With anything?

I unconsciously built my life around that concept. I didn't allow myself to commit to much, not people or activities or work. I never thought about buying a house. I didn't care much that work was a job and not a career. For the life of me, I could not visualize where I would be in five years. I used to tell people it was because every time I tried, everything would change. But it was really because in five years, I could be dead, so why bother to plan?

Then something strange happened. The chronic kidney disease – the one most likely to kill me – started to get better. When I was first diagnosed, I was led to believe that I was most likely on a slow decline toward dialysis and then a transplant if I could get one, depending on how stable I could keep myself. Ten years later, was that not still true?

Generally, it was, although studies were starting to show that if a patient could stabilize their kidney function, they could go on at that level forever. However, there was no evidence that people who reached stage 3 kidney disease ever recovered function.

None of us really knew what was going on. We speculate that I am hypersensitive to dehydration, which makes kidney disease worse, and as I began to exercise regularly, I also began to hydrate better, and my kidneys reacted well. Then again, it could just be that my body doesn't react as everyone else's does. The peripheral neuropathy of my early twenties is all but gone and I was that 0.03% of patients that reacted to amitriptyline with grand mal seizures. Whatever the reason, as my kidney function improved, my worldview began to change.

Maybe I wouldn’t die early. Maybe I would have time to leave some kind of legacy. Maybe I would have time let more people in. Or let any people in. On purpose, that is.

So what now? What do I stand for?

As they say in the title song, most nights I don’t know. It’s no coincidence that I started this blog shortly after I started getting better. Or that I switched employers for a more equal salary and better treatment.

The beauty of it is, I don’t have to know. Not really. Not yet.

It seems I might have time.

Let's Talk About Fear

I’m going to die. Eventually. It terrifies me.

I pulled my monster out from under the bed yesterday. There was a lot of kicking and screaming involved. This was the raw, emotional side of myself I have been avoiding for over 20 years.

See, I am an almost entirely cerebral creature. I think it was both inherited and by choice, but I have beaten my emotional self back so far and so often that it hurts to even consider what I feel. When my therapist asks me how I feel about something, I automatically start talking about what I think. I don’t know what I feel.

It was a defense mechanism at first. I needed it. Boy, did I need it. When I was young, I felt that if I let myself feel anything, I would collapse, consumed by having to deal with my life. When I got older, it was so big I didn’t – don’t – know how to let it go.

Those of you who read this blog know that I realized my mortality early. I was not quite six when I was the only one in my city to survive spinal meningitis. That was hard, and it made me angry. I wanted to fight. Which was good, because I needed to fight in order to recover.

Then I started losing people. My grandmother to lung cancer when I was 10, a family friend and surrogate grandfather the same year. He had a heart attack. At the hospital they told us he would get better, but he had a second heart attack and died. Then it was a peer, a friend, Paul, who died over Christmas break when a drunk driver jumped a highway median. He was 12.

I got angrier and angrier with each one. It wasn’t fair. It felt like I was always waiting for the next shoe to drop. And shoe after shoe after shoe did drop. I was in a constant state of braced for the worst. But I wasn’t afraid. Not yet.

It took diabetes to make me afraid, or rather, a gaggle of well-intentioned providers – doctors, nurses, nutritionists – to teach me that. To be fair, that was the prevailing wisdom in 1991. They would harass, harangue, and threaten. “You will die of a stroke before you’re 19 if you don’t follow the rules.” I am sure I am one of thousands who has had to unlearn how I was socialized to my own disease.

I did try to follow their rules. It didn’t work out so well. And instead of helping me find the right path, they kept trying to force me down a path I didn’t want to follow. My fear compounded when I was finally scared straight by the development of serious complications. Compounded, but never addressed.

By then, I had college to keep me occupied, at least for a couple of years. But before I could even finish that, my mother was diagnosed with pancreas cancer – a death sentence. I was sad and scared and desperate to hang on for as long as I could to the one who kept pulling me out of these things I got myself into.

That was the big one. My fear grew until all my other emotions had to hide behind it. I didn’t cry at my mother’s funeral. I would set my chin and clench my teeth and if I had to cry, I would wait until 2 in the morning, when I was sure no one could hear me, even when I was by myself in my apartment. I clamped down so hard on my subconscious that I actually didn’t dream for over 15 years. And no, it wasn’t just that I didn’t remember. I didn’t dream. I got REM sleep, but I did not allow my subconscious to participate.

I couldn’t afford to let any emotion touch me. If the floodgates opened, I would lose my self. (Not myself, but my self.) I still feel that way.

Ironically, the solution is to step away from my self, and to observe it for as long as I can, to recognize and understand whatever bubbles up. My therapist told me that in psychology, there is the rational mind (me) and the emotional mind (not me) and the best place to be is in the space where they overlap, the wise mind.

I've been running away from this for a long time. I'm not sure I even want to be in the wise mind. Rationality is easy, comfortable. It takes no energy, no change. But just because you decide you don't want to feel doesn't mean that you don't. I think that if I keep on as I have been, I will explode, which means my emotions will come out either way. I can either do it with some thought and control or wait until I have none. I'd rather it not come to the latter. So, I'll try. I make no guarantees, but I will try.

Buyer Beware

As chronic and autoimmune patients, we live lives of heightened control. Different conditions can be controlled by varying degrees. Some, like diabetes (my main one) allow for a lot of control because we know what causes it and therefore, what to do to regulate it. Some, like fibromyalgia are less well known, and therefore, it is harder to regulate. Either way, we focus on whatever details we can. We plan, we plot, we obsess over every possible way to exercise as much power as we can over our recalcitrant bodies. We think that if we can control all of these little details, our lives will be as close to normal as we can get.

The control we seek can involve several elements: nutrition, exercise, physical therapy, psychotherapy, medication, and medical devices. As research and treatments evolve, new or enhanced ways to address those elements become available. They may or may not be right for your condition, but we tend to jump on them anyway. If it’s new, it must be better, right? The next thing is the best thing.

Not so fast. The risks involved with new treatments can be scary, especially if the old one is working.

I have a thing when it comes to my condition. Everyone has a thing. We do it when we feel anxious or out-of-control, or sometimes when we feel anxious and out-of-control. Mine is research. If I learn of something that could help me exercise more control over my condition, I will research it to death. I read academic articles, reviews, technical specs if it’s a device, and talk to the people who run it.

While some of that information might be useful, not all of it is necessary. Here are a couple of things you can do to make an informed decision about a new treatment:

• Check with the FDA: Their processes for approval are lengthy and burdensome, but (annoying as they are) they are there for a reason. Run any new drug treatments, devices, and sometimes even diet supplements through their database and see what they have to say about the risks.
• Check with your trusted providers: You know your disease, but they will often know a lot about these “next best things”. Discussions with them are better than whatever you can come up with on the internet because you can’t tailor someone else’s reviews to how your body works. They will tell you whether the next development is just bells and whistles and not worth the money, or whether the latest diet trend is worth a try or a total fad. They will listen and make suggestions if you want to try new avenues of treatment.
• Listen to the voice inside your head: The truth is, we know. With a basic understanding of how the next best thing works, we know whether it will work for us. Instinct tells us. It’s hard to hear if we are feeling insecure or out-of-control, though. In those moments, we are prone to bury our inner voice under whatever we need to justify a new tool to address an old problem. Every time I have asked for a crutch to help me lose weight, the answer – from multiple doctors at different times – has always been no. Even using something as basic as an appetite suppressant could have a negative effect if used over a prolonged period of time. Each time I knew what they would say before I asked. I also knew they were right.

There’s a large industry built around all of these treatments, both legitimate and not. That industry spends a lot of money on advertising. They wouldn’t do that if it didn’t work. So, evaluate, but don’t get stuck in what the business world calls analysis paralysis. If whatever you choose doesn’t work, you can always go back to the way it was.

The March of Progress

Technology is not my friend. I can walk by a computer and it breaks. When IT comes, the issue magically doesn’t exist anymore.

Because of that, we don’t talk much about healthcare tech in this space. But there are some pretty interesting things going on in that field. I was reminded by that when I started seeing emails for two upcoming conferences in my inbox: HIMSS18 and Health Datapalooza. Those savvier than I am -- tech companies, government, and nonprofits -- are all working to develop the next big advance. One of the most foundational, that might have a huge impact on our everyday lives, is medical interoperability.

Medical interoperability is when medical data systems talk to each other. Right now everything is siloed, partly because many doctors, hospitals, and pharmacies are using outdated systems and partly because of laws in this country that protect patients’ privacy. It was a long hard fight to get that second one, which manifests itself in the Health Insurance Portability and Accountability Act (HIPAA) and protects an individual’s health information as a measure to prevent discrimination against people with medical conditions. You don’t want to be the topic of general conversation in a hospital break room or for your family to be used as a worst-case scenario by your insurance company as mine was in the 1980s (and that was before I had diabetes). The only reason we even knew about it was because there was a family friend in the room.

Interoperability could revolutionize the healthcare industry if they can figure out how to keep privacy rules intact. If all your providers, insurance companies, and even you can see your entire medical record, your providers would have a more detailed and holistic view of you as a patient. Trends would be less likely to be missed and one provider might catch a warning sign in their specialty that another doesn’t consider important. If you were in the hospital, vital sign monitoring equipment could talk to IV equipment. Your doctor could monitor you from your Apple Watch or Fitbit. Research institutions could take information that had been scrubbed of your identity to help develop new treatments for your condition. Real-time information would take the place of catching up after months.

Technologically inept as I am sometimes, I would welcome advances in medical technology. Not just the ones that blow your mind like gene therapy, but those that address the back of the house. Let’s face it. Our biggest nuisance headaches come from the administrative side of the medical equation. If they can figure out how to save time by getting everyone’s computers to talk to each other, that’s something I can support.

If you want to know more, check out the conferences mentioned above. They’re coming up soon, and I for one will be curious to see what the new year might bring in medical technology. What new advances would you like to see?

The Things They Don’t Talk About at Parties

It’s bad enough to be diagnosed with a chronic or autoimmune condition. After the initial rush of fear, anger, and anxiety about what it means, there’s a period of adjustment during which you learn your disease. You get your prescriptions, your devices, the plan your doctors recommend, and then you have to ratchet it into your life. There’s a lot of trial and error. And if it doesn’t work, you start playing with what you’ve got.

For me, that manifested itself in something called diabulimia, an eating disorder where you don’t take enough insulin to cover your food intake and basically end up starving yourself because your body doesn’t have the tools to absorb what you are eating. One article I read years ago compared the damage done to your kidneys to putting an entire turkey – not a chicken – down your garbage disposal every day. Like any eating disorder, your body will start to shut down if it doesn’t get what it needs, but the damage is accelerated because of the already-impaired immune system.

Into the woods

I was diagnosed with Type 1 diabetes when I was 14, a very vulnerable age for girls and boys. I had never been thin (it’s just not my genetic build), but before my diagnosis I weighed about 90 pounds. It was just when women’s clothes were vanity sized into size 0, and even that was a little loose. Everyone – teachers, friends -- told me how good I looked. Funny how my parents never did. They must have been worried to see me eating about 5000 calories a day and still be that thin.

When we finally figured out it was diabetes, doctors put me on a 2500 calorie diet and wouldn’t take me off. I gained 60 pounds in six months, started associating insulin with weight gain, and hello, eating disorder. It lasted six years and almost cost me my vision (retinopathy) and my mobility (neuropathy), and did cost me at least 40% of my kidney function.

Out of the woods

I was lucky. We had a family friend whose wife was diabetic. When I started getting retinopathy, he arranged to send me to the Joslin Clinic, which is the gold standard for diabetes research and treatment. They helped pull me out of it.  I was 20 by then. If I had continued, I would have killed myself eventually.

Apparently, diabulimia is a fairly well-known phenomenon, although it is not recognized as a complication of diabetes either in the United States or the United Kingdom. I never heard a medical provider mention it until long after I’d been scared straight. Granted, my first endocrinologist was an egotistical jerk, but even as I pulled myself out of that very bad place, no one ever named it and told me that I wasn’t the only one.

There’s a danger in this lack of discussion. I suspect that teenagers aren’t the only diabetics vulnerable to diabulimia, and I suspect that other chronic and autoimmune conditions have equally dangerous potential when we stray from medical advice – I’m looking at you, opioid addiction.

Don’t get me wrong. Being able to understand your body and manipulate your treatment can be vital to living your best life, but there are many paths you can take and not all of them are healthy. If your mind isn’t healthy and you are suddenly handed a tool you can use to get you what you think you want, like an “ideal” body weight, it’s just so easy to take the unhealthy path.

A good provider and a good therapist may have been able to keep me from that path, or at least shorten the duration. If we had known the danger, if we had been able to put a name to it to understand it, we would have been able to see the path out of the woods. It’s a lot harder to remain in a dark place when you can see a path toward the light.

Do The Right Thing

Last week, I introduced Reasonable Accommodation and outlined a little about how I was affected when how my former employer – let’s call them Stumble, Bumble, and Fall Consulting, or SBF -- failed to follow the law. Now I will go into more detail about what happened and what SBF could have done to be a responsible, accommodating employer.

First, let me give you the details of the situation. I am a contractor for the Federal government. For the first time in a decade with SBF, I went more than a week or so without doing client work. It’s a difficult situation, but a company as big as SBF has reserves to handle situations like mine. Finally, a project came along where SBF was a subcontractor to a smaller contracting company. I had no experience in the kind of work they needed, but it was client work and I wasn’t given a choice on whether to accept it.

I knew right away that it was going to be a bad situation. First, it was in one of the worst neighborhoods in Washington. There was no safe place to park, and in the four months I was on the project, there were four shootings in and around the premises where I parked, including the shooting of a pregnant teenager the weekend before I started. It was high stress even getting to the office, and that kind of stress affects blood sugar.

Additionally, I was commuting for a minimum of three hours/day with no flextime and no telework, which meant I no longer had time to exercise and plan meals as required for optimum care of diabetes.

Last, and worst, SBF was aware that the project I was walking into – as a task lead! – was a longstanding hostile work environment. The prime contractor had let people go for being pregnant and for being male, both illegal. The only people on that contract from SBF were there because, like me, they hadn’t had a project for a while. SBF knew they should have broken the contract long before I got there, but they didn’t. In the end, the prime contractor bullied me, and I was told I had to sit there and take it, without defending myself my team, or expressing concerns about how I could effectively do my job with the restrictions the prime contractor placed on us. This added to my stress level and contributed to the loss of control of my condition I am still struggling with.

From bad to worse

Most of us as chronic and autoimmune patients are protected by the Americans with Disabilities Act. As such, we are entitled to certain accommodations for our conditions. If our conditions get in the way of us performing our duties or, in my case, if our duties negatively impact our conditions, our employers must take measures (within reason) to adjust the situation so we can do our jobs and effectively look after our conditions. See below for a description of actions I took, actions SBF took, and actions SBF should have taken under the law.

I told my bosses at SBF before I started that the project was unsustainable, and that the HR department should look for another project as if I still didn’t have one.

• What SBF did: Nothing.
• What SBF should have done: Not made me take the project.

I repeatedly called and emailed my SBF bosses to keep them appraised of the situation and letting them know how the project was affecting my conditions. I begged them to take me off that project.

• What SBF did: Nothing, including not keeping me on HR’s radar for a new project.
• What SBF should have done: Arranged flextime or telework options, taken me off the project, or found me other work.

After three weeks, I found a promising new project that solved stress, commuting, and lack of experience issues.

• What SBF did: Barred me from taking the project because it was short-term (with the potential of becoming permanent), even though I clearly accepted the risk of being laid off if the project didn’t become permanent.
• What SBF should have done: Allowed me to take the project or found me another one.

In the end, the project and prime contractor wreaked such havoc with my diabetes regimen, my doctor had to write a note setting an end date to my participation on the project. SBF asked me multiple times to stay on since they couldn’t find anyone to fill such an awful position, but that letter at least protected me when the team I had worked with for a decade wouldn’t. Two weeks after I left the bad project, I started at the project I had found for myself, as it had turned into a permanent position.

This situation was so bad, I consulted an employment attorney, who, after an initial evaluation, thought I might have a legal case against SBF. I thought about pursuing it, but honestly, I don’t have the time, energy, or money to fund a lawsuit, at least right now. But I also haven’t completely abandoned the possibility, although I don’t know what the statute of limitations is.

Since then, I did really well on the project I found, and managed to stay with them when I left SBF. But I continue to struggle medically and haven’t really started to recover from the immense toll that unfortunate project took on my health. Next week, I will detail the medical fallout and why it is so dangerous for us when employers ignore their legal obligations to us.

Are You Seeing The Forest or The Tree?

I’ve wanted to talk about reasonable accommodation for a long time, but I had to leave my former employer before I felt comfortable doing that. It turns out not every employer takes the definition of “reasonable accommodation” to heart.

Reasonable accommodation says that, under the Americans with Disabilities Act of 1990, employers can’t discriminate against you because of a qualified medical condition. The definition of disability is opaque. Suffice it to say most, if not all of us in the chronic and autoimmune community are covered.

But what does being covered by reasonable accommodation actually mean?

The ADA says that if our conditions get in the way of us performing our duties, employers must make “reasonable accommodations” for us. This can include special office furniture, flexible schedules/telework, or even altering duties. For over a decade I had informal accommodation, mostly in the form of telework to make up for doctors’ appointments that would have eaten through all my vacation time. I am a contractor, so I made arrangements with my client and company staff on the project. No one seemed to care as long as I got my work done, which I did.

That changed in the summer of 2016. The details of the situation are for the next posts, but this situation turned out to be so detrimental to my health that my doctor wrote a note saying I could no longer be on that project. Nineteen months later, I still haven’t recovered.

My former employer’s failure to comply with reasonable accommodation laws caused more damage than I thought, and not just physically. One of the people responsible for the decision to keep me in the bad situation was someone I’d worked with closely for nearly a decade. I trusted him, which is not something I do easily or often.

When this colleague blocked my escape from the situation, it felt like betrayal, and man did that hurt. But instead of allowing myself to be sad and hurt, I did what they told me to and let righteous indignation sweep in to fill the vacuum where the hurt and sadness should have been. I built a bubble to protect myself from feeling what I didn’t want to. I was afraid that if I felt that, I would fall down a rabbit hole and not be able to climb out.

So, I built my bubble, and in doing so, I kept out all the good stuff, too: the excitement of a new job and good, impactful work; the satisfaction of maintaining this blog and connecting with some amazing people; and the support and plain old happiness I get from simply spending time in the company of people I love and trust. The mental effort it takes to maintain a protective bubble like that is massive. That’s the vicious circle I should have been looking at.

I have maintained my bubble since I started that awful project, and when my colleague, who was also my boss, couldn’t even be bothered to say, “Sorry to hear you’re leaving. Good luck in your new job,” a couple of months ago, it made it worse. After a decade there was not even an attempt at common decency, so I withdrew even more. Without the good to balance the bad, I felt more and more exhausted, making me less and less inclined to attend to my own health needs.

Now that I know what to look for, it will be easier to let go of my bubble, especially now that I don’t work for that company anymore. But that doesn’t mean it will be easy. I will have to allow myself to feel things I don’t want to feel and just be ok with it – my version of “leaning in.” That might take a while.

While I am not in a good place right now, I am not in a state of mind meriting a formal diagnosis, but obviously, my mental health has had a major effect on me physically, and it has derailed me for now. I believe it was actually dangerous for a while, with my diabetes out of control, and the resulting weight gain, which makes everything worse physically and metabolically. The one thing I did right, even during the worst of it, was go back to my therapist. I had been doing so well before that, I hadn’t needed treatment. But I needed it then. It felt like a lifeline.

Everyone has issues, sometimes more serious than other times. This is why it’s so important to have someone who can help -- a good therapist, access to a hotline (link to hotline listing), or someone who is trained to help you out of the more serious issues. I may have gone years trying to hold up my bubble, fighting with myself over what got my limited energy. Now it’s time to make improving my mental health a priority, and with it will come the energy I need to put myself back together physically. Or at least it will be a big step in the right direction.