Working with a Chronic Illness: Scientist in Government vs. Academia

As I was getting close to finishing graduate school, I was contemplating many career directions. I liked the flexibility academia offered, but the labor expectations of a postdoctoral appointment made that a difficult option for me with fibromyalgia. So I looked towards private industry (pharmaceuticals, hospitals, genetic testing companies, etc.) as well as science jobs in government. I knew they would be less flexible but also come with a saner work load. And I wrote about my thoughts regarding whether a highly flexible vs. a more routine-oriented job might better for a fibromyalgiac such as I in Part I under this title.

Finally, I chose a job as an environmental health scientist in government. And nearly every day, I thank my lucky stars for getting it! After 3 months of employment, I am absolutely loving my job (except for the hard bits here and there). Like everything, it has its pros and cons over the “standard” post-PhD academic route. And I felt it deserved a fair comparison for other grad students with chronic illnesses who may be considering non-academic options. So here’s my take on “sciencing” in an academic lab vs. on a government computer!

1. I do miss the serious flexibility academia offers.

Working in a relatively respectable position, I actually still have a reasonable degree of flexibility. Nobody would fuss if I came in at 9 one morning, instead of 8.30, or took a slightly longer lunch break, and just made up for it in the evening. But nothing quite offers the extreme flexibility that is unique to academia. It takes time to build up the leave time you need in order to comfortably make doctor’s appointments or other life commitments that may take longer than a couple of hours. Accruing leave at about 1 day per month means having to push through many flares initially, until sufficient leave time is built up.

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The sad reality of my flexibility dreams, captured perfectly (as always) by Jorge Cham!

2. I start work earlier, which can be painful (literally and figuratively).

Many of us have our “best hours” later in the day – I certainly do! – and having to start moving too soon before my bones and muscles have had a chance to thaw can be a struggle in the morning. As a senior grad student, I was able to work 10 AM to 6 or 7 PM, because I called my own shots. As a government employee, I feel the earlier hours very sorely on days when it is especially hard for me to get out of bed.

Realistically, however, if I took  a postdoc position, I would not have been able to exercise a 10-to-6 workday anyhow. Most postdocs are expected to work anywhere from 60-80 hours, under an intense amount of pressure. But on days when I am seriously flaring and desperately needing a bed to lay down on, I really miss the ability to work from home or just lay on the couch for 15 minutes while some test tube is incubating.

3. I really like the shorter hours though!

It is much easier to pace yourself when your body knows what to expect from each day. This job definitely offers that regularity of schedule. However, like with any transition, it is taking me a bit of time to find that new pace. Still, coming from an environment where the trade-off for flexibility is working till 1 AM in the morning, it was an interesting experience to leave every afternoon while there’s still some daylight! And now that my husband is all better, I really appreciate all the rest time.

4. You are actually off on government holidays and weekends!

This was a new experience for me too, as I typically worked through all holidays and many weekends as a graduate student (as most academics do). But here, we get several long weekends a year, and you are expected to NOT work during that time! These extra off-days often come right around the time I really start to need an extra rest day, making them very welcome and much appreciated! And I found out long ago, that weekend rest time is absolutely essential for me to continue working period. So it is really nice to have this guilt-free time off!

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Not anymore!

The sum of #3 and #4 is that this job comes with a reduced anxiety factor for me.

While I was in academia, I felt like I was always carrying a huge weight of unfulfilled expectations. I knew what I was expected to do, and that I was not able to do it. I was well on my way to completing the Ph.D. and had a history of being a dedicated worker, so I was not kicked out of grad school. But there was always the latent anxiety from knowing you are not quite the grad student your advisor may have hoped for.

Here, I finally felt that weight lifted off my shoulders. My boss is amazing, and she made it clear that I surpassed her expectations. And she is more than happy with what I am doing at the pace that I am doing it in. This has resulted in much reduced anxiety, and had added to my career satisfaction.

5. There is less physical activity as a data scientist than in the lab.

This could go either way. Sitting too long can cause extra pain and stiffness, so it’s good to move around time to time. But for me, the pain in my legs went down (in general) after I took this job! I imagine I must have been overworking them at the lab, likely by standing or walking more than my body could reasonably muster, and I never realized that until I got out of that environment for a while.

6. Government is more slow-moving and bureaucratic than academia.

Which, again, has its pros and cons. You will not publish a lot of papers very quickly, but the ones you do will be meaningful and thoroughly vetted before it even reaches peer review. Instead of publishing just for the sake of it, the idea is more to publish when you have something important or meaningful to say. While the bureaucracy can be irksome at times, it is the same mechanism that allows you rights to fight your position in case of any disagreement with the boss, or say if you need to negotiate special accommodations. In academia, your boss is your master. So if s/he does not agree with you, then other routes are all but blocked for you. Here, there are clearer rules for such things that both employee and employer must abide by, so there isn’t a ridiculous power imbalance.

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There is a WHOLE new vocabulary in the “adult” outside world, that I am now learning!

All in all, this job has really been a great boon for me! I am somebody who is environmentally conscious, and actually care about the topic of environmental health. In fact, what I studied before – epigenetics – is closely linked with how the environment can affect our health! It’s just that now, instead of working on the molecular mechanistics of it, I am working on the human aspect of it. Personally, I find that much more rewarding, knowing that my work is reaching people now, instead of just the hope that it might help somebody decades from now!

So if you are a grad student, or a scientist, who is struggling with a chronic illness and looking out for various options, I would recommend staying open to government jobs. In the future, I might even do a short series on how I was able to expand my horizons regarding career options (basically, getting over the fear that my science career was over if I couldn’t make it in academia), and other potential job options for scientists with chronic illnesses. I know I searched high and low for much of this information when I needed it, and sadly, found little of it. So, it is my hope, that these posts might reach others in a similar boat as I, and help them in at least some little way!

Love,

Fibronacci

Hidden Dangers of Chronic Heating Pad Use!

I absolutely detest “click-bait” titles, but this one is really important for those of us who live on a heating pad to manage our pain. So please do read on.


Recently I found some dark lines on my back which had a branched pattern — like veins on a leaf. There were no other symptoms except a slight bit of a burning sensation in the area. However, much of the skin on my back, arms and chest is tender and sore all the time anyway, so I didn’t think much of it.

Turns out, it is most likely a relatively rare condition called Erythema ab igne (EAI), also known as hot water bottle rash or toasted skin syndrome. (Sounds appetizing, eh?) “Erythema” refers to the “redness” of the skin in the area that is due to chronic and prolonged heat exposure (“igne”: fire). This is how this condition starts off, and typically goes unnoticed, until the reticulate (fishnet-like) patterns of hyperpigmentation appear.

EAI
Erythema ab igne (Image from Medscape)

EAI occurs at temperatures that will not burn the skin (~43-47 degrees C) but can cause damage to the skin and the blood vessels immediately underneath it. Historically, it was seen among older people who would sit close to a fire, or among workers exposed to heat on a daily basis (e.g. metalworkers, bakers, etc.). Nowadays, it is mostly seen among  chronic pain patients who repeatedly use heating pads for long periods of time. It is also often seen more in women than men, which I felt is worth mentioning because fibromyalgia also affects more women than men.

The only treatment option is to remove the source of heat immediately. And that is paramount, because while EAI is benign at first, if the offending heat source is not removed, it can progress over time to skin cancer! Just like chronic exposure to UV radiation can result in skin cancer, so can chronic exposure to infrared radiation (more commonly known as heat!).

Lay off the heating pad-1

The logic makes perfect sense, yet it feels like a nasty surprise nonetheless! I have been depending on my heating pad to be able to sit comfortably for some 3 years now. When I extolled its virtues for pain relief, I never knew it was damaging my skin (potentially irreversibly, depending on how far it has progressed).

Needless to say, this news did not make me happy. It feels critically unfair that one of the core pillars in my fibro management scheme is now being taken away from me. It feels like somebody’s idea of a very unfunny joke.

I also want to mention that there is another condition, called livedo reticularis, that looks similar to EAI, but may indicate more serious underlying disorders, such as lupus. But LR seems to typically show up as reddish fishnet-like pattern on the legs (and does not correspond with a patient history of heating pad use). Distinguishing between the two is very important, because one of the treatments for LR is application of heat to the affected area — the one thing you must avoid if it is EAI!

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Livedo reticularis (Image from MedicineNet.com)

If you see such marks on your skin, please have it checked out by a doctor, preferably a dermatologist as many primary care physicians are not even aware of EAI. This happened at a really bad time for me, because I need to change my GP with a change in health insurance. (Isn’t healthcare in America a dream?!) I am hoping the next doctor (whom I am yet to find) will take me as seriously and treat me with as much compassion as the last one, and have me properly checked out by relevant specialists.

The bottomline of this post is, if you suffer from chronic pain and heat is a major source of relief, please be judicious when using a heating pad or hot water bottle. There are hidden dangers associated with their chronic use, like the development of EAI, that I had no idea about! I am not sure I can completely give them up yet, but I am definitely cutting back on their use. It does make sitting at work very uncomfortable, but I am horrified by the potential of these lesions turning malignant. If you depend on the heating pad as much as I do, I do hope you will be careful about how long you use it for, so you don’t entirely lose your source of relief in the long run due to EAI.

Love,

Fibronacci

Weekly Photo Challenge: Out of this World

Seeing a flare to its end (or what I hope is the end anyway) is a feeling truly out of this world!

After being stuck in the tunnel for so long, to finally see some light at the end, is a delightful feeling.

Featured image: Creation, oil on 18X24″ canvas (available)

And yet I struggle with the thought that this is as good as it’s ever going to get. For everyone else, life expands, they incorporate more and more experiences as they move forward. And I am happy if it simply doesn’t contract any more! I move forward too, but always against the wind, and always aware of the limitations.

And yet, as a human being, we register differences in condition more than so than the absolute value of it. This means that despite all the limits placed on me, my instant reaction is one of pure joy, an expansion of consciousness, to realize that I am improving from a worse-off state. That what I am improving to is what most people would consider “lazying” bothers me only when I think about it in more intellectual terms, ignoring my emotional reaction to it.

I realize that my initial happiness is only dampened because I still compare my state to that of other healthy people my age. I compare it to what I used to be at one time, what I remember feeling like but haven’t felt like in a long time. But with a chronic condition like fibromyalgia, my world now spins at a different speed than it does for others my age, than it would have for me if I hadn’t developed this condition. It is not fair to compare apples to oranges.

I have learned to see that slowed spin rate on neutral terms — it has some good and some bad, just like there would have been had my world kept revolving faster. But sometimes I can’t help but feel that the existence of the difference itself is somehow mocking.

At one time, I thought I was closer to accepting my situation. And I was, but only under the circumstances I had grown comfortable in. As my circumstances changed, I realized I am on this journey anew.

Ever reaching for the light . . . thinking I feel its warmth . . . but then my world takes another spin, and I am back in the dim, reaching for the light again.

The painting in the featured image explores many of these emotions that expand through time and space. I am sure everyone has something they are struggling with, where they feel they are locked in a tunnel, and are forever reaching for the light. I think of that when I feel I am fighting an unfair battle, and try to not feel so alone in it. I try to think of the progress I am making, and remind myself to simply breathe.

Perhaps the important thing is not to win the battle, but simply to keep fighting it, and fighting it well. And all the while allowing yourself to feel the joy of small victories, however small they may be, just to feel like it’s not all in vain.

Love,

Fibronacci

 

Each painting has a story, one that I strive to tell here. Since many of them have to do with my journey with fibromyalgia, a fraction of the sales from my paintings will go to the American Fibromyalgia Syndrome Association (AFSA), who fund research into this poorly understood condition. If the paintings and/or the cause touch your heart, as they do mine, please feel free to contact me here or through my Facebook page for more information. Thank you for accompanying me on this journey!