Reimagining your Professional Identity as a Scientist with Chronic Illness – Part III

First, let me start by apologizing for dropping the ball on Part III of this series. I haven’t been doing very well this last month amid high levels of exertion and stress, which inevitably led to higher levels of pain, fatigue, brain fog and malaise. None of that was conducive to sensible writing, so I decided to try and wait it out. Irony of ironies, I finally write the final segment today, when I feel largely bed-bound from a crash! Such is life I suppose.

To recap just a bit (since it’s been a while), this series has been about sharing a roadmap that helped me reimagine where I can take my career after I realized academia might not work out for me. It led me to do some serious introspection about why I loved doing what I did, and how I could continue, albeit in a different fashion, so I can have the same job satisfaction while doing something different.

In Part I, I shared my story of how I had to first get over the guilt of letting so many people down (including myself in some ways), and leaving so many unfulfilled expectations in my wake (including my own). This process made me realize that before you can dream of something different, you have to first allow yourself to dream that dream, and be OK with all the uncertainties that come with major change. That was Step #1.

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Allow yourself to fly free

Once I was OK within myself with making a major career change, I had to somehow figure out where to go with that. Which direction should I go in if I walk away from the ivory tower?

In Part II, I discussed the 3 core steps (Steps #2-4) designed to help me figure out:

  1. What is it exactly about my current job that I love doing?
  2. What are the skills from my current job that I can apply elsewhere?
  3. What do my interests (#1) and choice of skills I chose to master (#2) tell me about my personality?

From here on, then, it was about figuring out the directions I could take my skills in, based on my interests and general personality traits, so I can continue to feel the same core enjoyment in my work.

Step 5. Choosing potential career paths

I would recommend thinking as wildly and broadly as possible at first. Think of every potentially related field that strikes your fancy, and where you think you can use at least some of your skills (even if the job requires other skills you don’t have yet). And then limit those options later if they fail the “reality check” (Step #6).

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Let the sky be your limit

Being one who loves the intellectual, human and communication aspects of science, as well as playing with cool science equipment (“bench work”), my list looked something like this:

  • science writing & communication — I always enjoyed giving science talks and am pretty good with presentations, and enjoy the challenge of simplifying complex materials for easy understanding.
  • science publishing — Slightly different from science writing, in that I was aiming for more assistant-editor or editorial internship type of positions.
  • genetic counseling — I certainly know enough genetics and liked the other idea of working with people to help them. The largely autonomous nature of the position also appealed to me.
  • genetic testing (clinical laboratories) — I could do all kinds of fun “bench work” as a lab personnel, and could eventually work my way up to having my own lab.
  • teaching — I love working with students, and thinking of new ideas on how to teach better.
  • working in pharmaceuticals or biotech firms The idea of doing biomedical research but on a shorter schedule was the main appeal here.
  • crime lab — Another clinical laboratory job, like genetic testing. Fun fact: it was my interest in forensic science that first drove me towards a college degree in Biology!
  • other health-related professions — This is where I was toying with, oh you know, environmental health, where I could use some of skills and interests to directly impact peoples’ lives.

Funny thing, the environmental health/epidemiology job that was my wildest shot is the job I am currently in now (and loving it too)!

So don’t be afraid to think wild and different. But also, notice how everything I wrote above are what attracted me to those career paths. Recognize that reality may be very different!

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Be aware of the shadows in the path you choose

Step 6. Doing a reality check

There are three levels to this reality check:

Reality Check-Level 1. Is the job a practical possibility?

I might love science communication, but if I haven’t already created a portfolio that proves I am good at it, no hiring committee will take my word for it! It takes a license to be able to work in a clinical laboratory, which in turn, takes some studying and shelling out not an insignificant amount of money. It also takes 2-years of schooling, and even more money, to be a genetic counselor. So it’s worth doing some serious thinking at this stage: You may love the job or career path, but is it a practical possibility? Would the job require you to move elsewhere and can you manage without help?

Reality Check-Level 2. Does the job appeal to your personality?

I might love doing the science, like for instance, working on a new kind of cancer drug. But am I OK with the company charging people a ridiculous amount for that drug, if all the while the people at the top making the big bucks, justifying the charges as funding for research? Now, I’ll be the first to admit biomedical research is expensive. And I have nothing against making a profit. But I cannot reconcile myself to science where the primary motivation is profit, and not peoples’ benefit.

You may love the actual job but would be you be happy in the larger environment the job is set in? Does it fit with your personality?

Reality Check-Level 3. Does the job fit with your health care/self care needs?

Spoonies, remember where we started? I left academia because of the expectation that I will work 70 hours a week. My body cannot deal with that kind of exertion. So if the reality of the next job is basically the same, then it cannot be a real solution. This may be the last point in my six-steps to reimagining one’s professional identity, but this is definitely not the least! It is absolutely, the most important, in fact. A successful change of career would be to where you are able to engage in your profession while also taking care of yourself.

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Allow self care to take precedence

It helps to have a list of problems you have with your current job  — things about the job that prevent you engaging in self care or which are triggers for flare ups. And then compare this list to the new potential career option and ask if at least some of those are mitigated. No job will be perfect where you engage in everything you love doing and be able to mitigate all your health issues; it will always be a balancing act. But as long as the scales tip in favor of your health, it is worth further consideration. If you find that it does not, it may be worth considering something else.

All in all, these 6 steps have led me from a career in a biomedical laboratory to one on a computer in public health. Here I am using my data analysis skills and learning new ones in epidemiology. It is not perfect I miss the flexibility of academia but it has other things going for it that I did not have before, such the being able to directly impact people’s health and attitudes. This fits in with the kind of scientist I would like to be; one who uses science to help impact people’s lives for the better. I also enjoy the intellectual challenges that the job poses, being a complete newbie in the field of public health and epidemiology.

While not all my health/self care needs are met, my current job has been an improvement in many ways from the previous one. All in all, I would say I am happy with where my six steps of soul searching has got me. This job has allowed me see that a steady state can exist for me, where work does not eat into my health. And it is indeed practically possible to work as a scientist while also battling a chronic illness.

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Every day brings a new set of possibilities

That last bit I seriously doubted until I worked out my options from Step #5, which was my first glimmer of “real” hope that this might work out after all. I know many spoonies often struggle with where to go if they cannot remain in a profession they identify with, as I did for a long time. This is especially true for grad students (spoonies or not) because we become so specialized and go so deep into our fields that it becomes hard to imagine something different from it. If that is the case, I hope my three-part story here of how I broke the mold helps you think of ways to break your own as well.

As a final note, I would like to add that one need not only look towards paid jobs when reimagining their professional identity. It is entirely possible to engage in your core interests even from unpaid work and hobbies. Either way, I hope that the steps in this series of posts help you take a piece of your life back that your chronic illness may have stolen from you.

Love,

Fibronacci

Reimagining your Professional Identity as a Scientist with Chronic Illness – Part II

Since around the time I was planning my graduation, I had been giving a lot of thought about how I can be a scientist without pushing my body farther than it can realistically go. I was lucky that I could still work and that meant a lot to me. I wanted to keep it that way instead of sending myself down a bad spiral with a workload I could not handle. But I found it terribly hard to extricate myself from the “academic conditioning” that academia is the only way to go for a Ph.D.

From my internal deliberations then, aimed at redefining my professional identity, was born this series of posts. At a time when I felt lost, not seeing a way forward for myself if I did not continue on the path I was already on, this series of steps helped me devise a new direction for myself.

While I hope it will be helpful for other scientists/grad students seeking a path outside of academia as well, this post is not only for them. Too many of us spoonies are forced to relinquish existing careers we cannot handle anymore. I hope this post is also helpful for them who may be wondering where they could possibly go if they quit a job they closely identify with.

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The path “least trodden” is the path forged for oneself by one alone.

In Part I of this series, I discussed Step 1, getting over the guilt of leaving academia, before I could even start thinking about other paths. The guilt was on many levels, but I mostly felt bad about how I was another statistic adding to the list of chronically ill people leaving academic science, instead of standing up to it and perhaps helping to make the road easier for future grad students like me.

But I quickly learned that you cannot educate everybody — even when you talk the science behind your condition to other scientists. I also learned that my first responsibility is to always to myself; I cannot do anything for others if I cannot take care of me first. And if I wanted to continue sciencing, I would have to find a fairer path than the one I was on.

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Allow yourself the freedom to fly free

Once I got that, I was able to move on to the three core steps that helped me figure out where I could take my life after academia.

Step 2. Understanding what you enjoy about your current work

Assuming you enjoy doing what you currently do, figure out what exactly is it about the job that you like. Let’s call these “transferrable interests.

For me, the intellectual aspect of the job was perhaps the most rewarding, followed by the thought that my work might benefit people in some way some day. I also enjoyed the hands-on “bench work,” i.e. all the pipetting, playing with test tubes and chemical solutions, and sticking them in fancy machines that use mind-blowing technology. Regardless of the frustrations inherent in “bench work,” I found joy in the process itself, regardless of the results (though a successful result always added to the joy!). And finally, I enjoyed sharing knowledge with others (through talks/seminars) and helping a new generation find the joy in science (through my role as a teacher).

Figuring out what about your day to day activities bring you happiness is a great place to start, because it lays the foundation for the kinds of jobs to seek. Ideally, you would then look for jobs where you can still engage in as many of these interests as possible.

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Look within to find your own daily source of joy

Step 3. Recognizing what you are good at in what you do

This is the part about “transferrable skills.” Many grad students (including myself) get so absorbed in the day to day workings of the lab, that we start to feel like our skill is the entire package. But if we look at the components of the package, we realize that the individual skills could be applied to other things. For example, nearly all grad students probably have the at least some of the following skills by the time they finish grad school:

  • Creative as well as critical thinking
  • Troubleshooting skills (i.e. ability to figure out what’s wrong and how to fix it)
  • Research skills (i.e. the ability to sift through a haystack to find the needle)
  • Solid argumentation skills (i.e. being able to back up what you say with facts)
  • Ability to clearly communicate verbally and in written medium
  • Ability to communicate to both specialized and non-specialized audiences
  • Experience with Microsoft Office (or equivalent) products, other softwares (e.g. statistical or image manipulation tools), and/or technical skills (e.g. programming)
  • Great organization and project management skills
  • Tenacity to see both short- and long-term projects through to the end, regardless of their complexity

Recognizing the specific things that you are good at helps in two ways: (1) it adds to your confidence that all that time you spent in grad school wasn’t wasted time even if you cannot continue in your planned path; and (2) it helps you start practically looking for where you can now apply your skills, and get paid for doing what you are good at!

Once I overlaid the jobs that that matched both my skills as well as interests, I knew I finally had ball rolling!

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Recognize your own blossoms

Step 4. Realizing what #2 and #3 tell you about you

Understanding your transferrable interests and skills are great, and they might help find job options that sound good on paper — but they alone may not serve you well in finding a new fulfilling job until you understand what your interests and skills tell you about your core values and motivations.

For instance, I would describe myself as a scientist with a heart; who sees science as way of bettering the world and helping humanity. I am not someone who views science as a way of making money or how to snag the next big patent or paper. I am also not a science snob; I enjoy talking science with other scientists and non-scientists alike. More than scientific facts, I lay emphasis on the scientific process, which I like to talk about with people, to help them make informed decisions. But I also recognize that not all things can be done “scientifically;” some things are just based on how you feel, and I don’t discount the validity of that approach, when appropriate, either.

Realizing the motivations that drive our interests and motivate us to master the skill sets that we are good at help to rule out certain jobs that may involve doing the things we like but does not fit with our overall personality.

For example, I could not see myself working in a place where the primary motivation for doing science was profit. (I have nothing against making money, as long as that is not the core goal of the science I am doing.) Knowing this helped me rule out certain options (e.g. the pharmaceutical industry), and helped me draw up a shortlist of potential job options.

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When you find yourself considering an unlikely branch, return to your roots to see if that’s where you belong.

In the third and final segment of this series, I will discuss the last two steps in my process, as I used my reflections to draw up a list of potential career paths and the final considerations I made, especially regarding my health, before moving forward.

But these are the core three steps that I used to actively decondition myself from thinking that academia is all there is for me. Breaking down my job into its component parts and analyzing what it all meant to me helped me realize there may even be potentially better directions for me out there than what academia had to offer!

At all major forks in life, I feel like some introspection is key to helping us overcome the hurdles and find a reasonable solution. But it can feel like we are lost in a sea of confusion when we are faced with losing a career path we closely identified with. In times like that, I hope these steps can help one understand why the job means as much as to them as it does, and then apply those core motivations in a more health-friendly direction. Stay tuned for more on that in the next post.

Love,

Fibronacci

How I did Graduate School with Fibromyalgia

Earlier this month, I officially graduated with a Ph.D. in molecular genetics.

It is both relieving and terrifying to have graduated, finally having no set obligations. After the months of intense flares that I was able to tame not all that long ago, I have decided to take a break before moving on to another job. Alas, I still have papers to finish in the meantime, and my future to contemplate, so it will be interesting to see how this break turns out!

But now that I have finally graduated, I feel a bit more confident writing this piece, a list of 10 things that helped me do graduate school with fibromyalgia.

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When you feel trapped . . . but know you’re capable of flight

It is sort of a “Part II” of my Reflections on Graduate School, but with more practical information regarding the management of fibromyalgia, so I hope that it helps a few more of us chronic illness fighters navigate through the quagmire of graduate school. And because many of these suggestions apply in general as well, they may as well be my 10 tips for managing fibromyalgia!


1. Prioritize –  With a chronic illness, you may not be able to do everything you would like. So prioritize what needs to be done first, what is most urgent, and do that first. Work your way down the list of less important things (aka, things that can wait till tomorrow). That way, if you run out of your energy aliquot before getting them done, you do not have to push yourself to do it anyway.

2. Get help when needed (undergrads/assistants) – It can often be difficult to admit you need help, and then put forth the effort to train people under you, and supervise their work. But with the right, reliable person, this can be a lifesaver! It takes some work to switch from the “doing”  mode to the “managing/supervising/mentoring” mode, but those are extra skills you have the opportunity to learn! And it is win-win on both sides: your student learns some new stuff, maybe even feels a taste of independent science (depending on their level of experience), and you get to rest your body a bit, while still working your brain!

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How fibromyalgia helped me be a better mentor

3. Make your work area as comfortable as possible – If you spend a lot of time at your desk, it helps to create an ergonomic workstation – which, of course, is a dream on a grad student salary!  So I have a pillow on my high-back office chair (both hand-me-downs), and a heating pad against my back, to help me sit “without” pain. I also have a small box under my desk, and a blanket. The blanket is for the extra chilly-feet days. As for the box, I often put my feet up on it so I can recline, and be comfortable at my desk. I realize it is not necessarily the best posture at all times, but (perhaps unfortunately) in my mind, pain relief trumps all else – and it really feels so good to stretch my legs out comfortably on the box! I also have a TENS therapy unit at work. I am not 100% sold on TENS therapy, and it looks ridiculous to be twitching or jerking if someone walks in, but I’ll try anything when I’m desperate! A friend also let me have an ergoBeads cushion to rest my wrists while typing. I am not frequently wracked with wrist pain, but I am grateful for anything that may prevent it!

4. Seek working solutions for cognitive problems – I am perfectly aware how cognitive dysfunction can get in the way of the smartest of people. Unfortunately, brain fog has struck me at some of the most inopportune times as well. I do not have a solution for every time this happens, but I have written an article before on how to manage brain fog so you retain sufficient brain function on a day-to-day basis. I hope that provides some ideas on this point!

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As any self-respecting scientist will tell you, the solution to brain fog is of course COFFEE! (Do not believe them blindly)

5. Slow down – One way of minimizing brain fog is to slow down and take it at your own pace. I know that in graduate school we are conditioned to feel guilty for slowing down, and not all professors even tolerate it enough to let us continue. I was very lucky by that measure. I had a project that could sit in the freezer overnight (or even a few days) if needed, and a prof who did not kick me out for doing 10 AM to 6.00-7.00 PM days. I am ashamed to admit that for about a year, when I was on physical therapy, I worked part-time (<8 hours) two days a week, though I tried to make it up sometimes over the weekends whenever I could. I don’t think my boss has been too happy about it necessarily, but I have tried to be as efficient as possible during that time, and finished all my responsibilities on time. I feel like slowing down was my #1 key to even continuing in graduate school, though I frequently worried about coming off as “lazy” or “unmotivated.” But the truth is, my motivation to continue doing science is what convinced me to keep the reduced hours. The alternative was to not do it at all. I wrote more about this topic in a previous post whose title says it all I think: Slow and steady stay in the race.

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The sub-conscious can be a good motivator, but try not to let it bully you!

6. Use flexibility well – Flexibility is a double-edged sword. If you are working independently, and do not have an overbearing boss, academia offers more flexibility than any other situation I can imagine. This is great on those really bad days when you absolutely need to stay in bed. Assuming your work can wait (and I realize not all work can), the flexibility means that you can rest now, and just catch up over the weekend, if needed. However, flexibility can also lead one to keep odd hours, or no set schedule at all from one day to the next. This can be problematic as your body does not what to expect when. I feel like keeping a steady routine was really key to me getting a handle on my “new normal”, so use the flexibility graduate school affords with care.

7. Do not procrastinate – The other issue with flexibility is that it becomes really easy to procrastinate! This is usually a bad idea, in my opinion. Almost invariably, as the stress of an approaching deadline builds, I feel my FM symptoms worsen. If at that time, I also need to do a bulk of the work that I hadn’t done before, that robs me of the rest time that my body needs. Also, it is more stressful if you know you have a lot of work to finish in very little time. So if your symptoms react to stress, try not to procrastinate!

8. Sleep well before important days – Lack of sleep or poor sleep often makes everything worse for me! I hurt more, am tired more, and can think less. So if there is an important day – such an exam, meeting or interview – I try to get good sleep the night before! I have found zolpidem (Ambien) to be an excellent aid when all else (hot baths, herbal teas/supplements, etc.) fail.

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The secret to avoiding this vicious cycle is to use flexibility well and not procrastinate! And, of course, treat your body well!

9. Practice and prepare, but be OK with making mistakes – This is as true when you are teaching, as when you may be giving talks and presentations. Despite practicing a lot before my dissertation defense, I fumbled more times during my talk than I would have liked. Though in retrospect, and from the audience’s perspective, it was not such a big deal, it sort of wounded my perfectionist’s soul. And yet, each time, I picked up where I fell, shrugged off a little and moved on. When I have made mistakes while teaching classes, I have admitted it, and then turned it into a learning opportunity. I feel like fibromyalgia has taught me more about being OK with making mistakes than anything else ever – enough so I now call myself a “recovering perfectionist”!

10. Try not to schedule back-to-back classes – This one especially holds if teaching long classes, such as 3-hour-long laboratory courses, when you are on your feet and active the whole time. It is also one of those things where it just depends on the person! If it works better for you to schedule it all on the same day, and just have one miserable day a week, instead of two, then ignore this point. But if you are like me, and that one day casts a shadow over the entire week, then it may not be worth it. I have found it easier to split it up over multiple days, so I am not under too much strain on any one.


Graduate school (in an academic institution, at least) is interesting because you are part employee and part student. So I hope that my management tactics has some relevance not just in graduate school, but school in general as well as the workplace, and not just for fibromyalgia either, but other chronic illnesses as well.

Cheers to all my fellow-fighters!

Love,

Fibronacci

Tough Realizations (Part II)

After a recent particularly bad flare, I had to make a difficult decision to walk away from a field in which I realized I was not welcome at anymore. If I stayed, I would constantly be forced to push myself beyond what I was physically capable of, and would still not be able to meet expectations. So you would think the separation would be mutual and amicable; yet it is not.

In many ways, I feel like I am still very tied to my work identity (although it’s been a work in progress detangling myself from it). Being a “scientist” is one of the major ways I identify myself. Every other descriptor I could think of – artist, woman, chronic illness fighter, etc. – are all farther down the list. When I think of descriptors of myself, “relationship phrases” don’t show up very high either. Many people identify themselves strongly as a parent (father/mother) or child (son/daughter) or spouse (husband/wife), or in other such relationship terms. I have trouble with that. I have always been a painfully independent person, almost to the point of being a loner. And I suspect it is the associated loss of both personal and financial independence, that comes with being ill and out of work, that is at the core of why it has been so hard for me to face the fact that I just need to take a break to focus on my health for a while.

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I am tired of pretending I am stronger than I am . . . so why can I not STOP?

The loss of personal freedom has been something I have been constantly struggling with since developing fibromyalgia. While I can be great at offering and providing help, I absolutely suck at seeking and accepting it! It took me a while to even recognize that I had my partner in my court, and that its OK to lean on him and allow him to help me. It made a world of difference once I let myself be helped with my day to day tasks! And for once, I felt comfortable enough being helped that I never realized how hard it would be physically to live without that help!

Living in a small town, my chances of getting a job here were pretty minuscule, especially in science. For many years, I kind of saw this as a boon because I hated being trapped in one place for too long, and this place seemed to come with its own time limit. But now that it was time for me to move on and take a job in a different part of the country, I had to seriously consider how I would manage a demanding full-time job with other issues like uncertain transportation (potentially a lot of walking), cleaning, cooking, laundry, bathing/hair washing, and a myriad other day to day things that I often need help with. All of the little things that didn’t even merit a thought in my brain at one time are now all serious issues that have the potential to wipe me out and flatten me on my back for days.

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Accepting help is its own kind of strength

I realized that for the first time, I actually need my husband to be with me, physically, and help me out! Not to mention, I would also need him financially, if I were jobless, and not just to provide general subsistence (a shared need), but also for my healthcare needs (a very personal one). And I have never needed anyone in that way before. As a person who prizes her independence, that realization – that I might really need someone now – was one of the toughest I have ever had to come face to face with.

My husband knows how hard that is for me. In fact, he has always known it. That is why he has never made big deal of helping me – he just did it quietly and unassumingly – and made a point of doing so without treating me like an invalid. I feel like very few people are lucky to have that kind of love in their lives. And that is why – perhaps what has been even tougher for me to face – is that even that kind of selfless love does not make up for the sense of loss that I feel due to my illness.

This realization has been really hard for me because it is almost like admitting his love is not enough, despite everything he does for me all the time. And it makes me feel guilty, because he has been the only constant force through many of the things that I have been battling for many years. Yet it is not as if I am not grateful to him and for him. But it is the gratitude that one might feel for nurses when interned at a hospital. It’s great to have that tender loving care, but they would much rather never be in the hospital in the first place!

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It is through the snow that spring bursts through!

Though, in some ways I wish I never had to face these harsh realizations, in other ways I am grateful for them. It has given me a chance to really think about why my work identity matters so much to me. Why am I so loathed to accept help? Why do I feel this insane need for independence? It has given me an opportunity to delve deeper into myself and work on long-standing issues that I may never have otherwise. So as a person who craves new and varied experiences, as unpleasant as this one is, I still see it as an adventure! I am still expecting good things to come out of this time of uncertain and difficult realizations. I may be a ship in a bottle for now, but that doesn’t stop me from still looking out towards the sea.

Love,

Fibronacci

New Year, New Me – NOT!

I had high hopes for 2017.

I felt that, finally, I was making some real progress. I was busy at the lab – hoping to graduate this summer! – but for the most part, I was handling that well enough. I felt there might be some real hope for me after all. Maybe I was really beginning to see an upswing in my fibro journey!?

But of course, that was not to be.

I was excited about some progress I had made towards taking my art in a more abstract/figurative direction – all in the “new year, new me” vein. But in retrospect, I see dark shadows in the face of my Anima and colors which speak of angst and struggle.

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Anima (8X10, oil on canvas)

With a change in weather, mounting work pressure, lack of adequate rest time, and no physical therapy, I soon found myself in another fibro rut. Except this one is compounded by a resurgence of my depression.

Usually I can attribute my depression to a side-effect of a fibro flare. It is no fun to feel tired and achy all day long; like you’re pushing yourself through a busy work day when you have the flu. And after a few days . . . weeks . . . of it, it really starts to mess with your head. With little time for rest, the body takes a toll on the mind.

A few weeks ago, a feeling of “meaninglessness” overwhelmed me. I just couldn’t see the point of doing the things I do. Like I am just going through the motions like a mindless robot. And I didn’t just feel that way about my research. It was my entire life. I guess I don’t see the point in my existence. What am I really here for? What have I really accomplished? Why do I do the things I do, feel the way I do, think the the thoughts I do?

Please don’t get me wrong. I am not suicidal. Not even close. In fact, if you saw me, you would probably not even know I was depressed.

In true scientist fashion, the problem-solver in me jumped up and tried to find solutions to my “meaninglessness.” The easiest thing to do was find a job I really cared about. I searched high and low for chronic pain researchers who might be able to use my existing training, but without much luck. Now I am just job-hunting everyday, trying my best to only stick with those types of science which really ignite a passion within me. But that kind of passion is hard to feel when I am low. I see problems in everything I find. I see every reason why I might not be a good fit. Though I know that I will have to put in some on-the-job training for certain techniques – and I know I can do it, I already have, and successfully, many times in the past – when I’m depressed, it is hard to feel the confidence to be able to do it in a new, unfamiliar environment. And that lack of confidence is hurting my self-image, and adding to the meaninglessness of my everyday “chores.”

It would help if I knew what would add meaning to my life. It would help to know what I really wanted to do. But I don’t. All I truly want is to feel better. To feel relaxed, carefree and pain-free, like I did on my vacation. I want to take off the heavy chains I feel I am carrying around constantly. I know that nothing I do differently would eradicate this feeling. The “meaninglessness” is a state of mind I am in, and that would pervade any physical or mental activity I engage in.

jacob-marley
Jacob Marley in chains is my analogy for what depression feels like. (Image from “A Christmas Carol” with George C. Scott & Frank Finlay)

As a coping method, I have taught myself to suppress pieces of myself, as needed, so I can continue to function halfway normally in the world. The trick for me is to keep other parts of my brain constantly engaged. Try not to give air-time to the part that is depressed. A “try-not-to-think-about-it” attitude. It actually makes some sense, because this is one case where thinking does not resolve the issue anyway. There is only one caveat to this effort in suppressing the part of me that is depressed and wants nothing to do with the world, turn inward into the mind, and stay there. It requires constantly being on guard! And that is exhausting. But what other choice is there?

My previous experience suggests that “fake it till you make it – and believe in it!” is a reasonable strategy. It has worked in the past (sort of). So I am pushing myself to stay open to new possibilities, brush away any feelings of inadequacy or lack of confidence that crops up. I am trying to keep my job search to fields where I think I could find some satisfaction in, and could contribute without running myself ragged in the course of it. Most of this is running on auto-pilot. Like I am running an automatic algorithm inside my brain to do things for me, because the real system administrator is absent.

I know this phase is temporary. This too shall pass – as it has before. In the meantime, all I can hope is that I programmed my automatic algorithm well enough to keep me on the right track. It has not failed me before (within a reasonable margin of error, of course). And I hope that it will not now.

Love & Hugs,

Fibronacci

Weekly Photo Challenge: Fun

I know I have shared this painting before in my post about humor for pain management. But it was just too appropriate for this week’s photo challenge theme, so bear with me one more time!

For those who don’t know the story behind this painting, I have described it in detail in my original post (linked above), but here is a short version:

On a recent vacation with my friend’s two young daughters, my husband and the girls decided to play a silly joke on the server by dropping all our spoons in our glasses. The confused look on the server’s face as she tried to gauge the bizarre situation without letting it show in her voice was classic! It was a supremely dumb joke that then became a bit of the tradition with the girls. And since then they have sending us spoons-in-glasses pics from many of the restaurants they now visit.

In order to commemorate the birth of a new dumb tradition, I painted them the picture in the featured image and called it “The In-Joke” (for obvious reasons, since few who weren’t there to witness the event are likely to see the humor in it).

The real reason I wanted to share the painting and the associated story again is this:

I read a beautiful article today on Light Everyday about how we often fail to realize how much fun we are having, all the time, in the course of living our lives, because we get so caught up in the preconceived notions we hold of what “fun” should look like.

At my age, a “fun” vacation is marketed to look either like a luxurious girls-time-out in a beach-side spa resort with a snazzy nightlife, or an adventurous backpacking trip across the mountains at the end of which you are supposed to “find yourself” (whatever that means). Not dropping spoons in glasses with two young children at a tiny diner on a family vacation, as I squirm on the chair to try to ease my pain best I can! Yet that was one of the funnest vacations I have ever been on, and that particular memory is one of my most cherished ever, and one that we keep referring back to every time we eat out!

My current point of view, however, is relatively newly developed. For a long time, in my past life as a healthy person, I was also blinded by what “fun” should look like. And I resented the fact that I never had enough money or the personality to have it!

It is unfortunate that I had to develop a chronic illness to lift that veil off my face and finally see how much fun I was having everyday, just doing everyday things, nothing special or out of the way.

calvin-hobbes-summer-is-doing-things-or-nothing

I have fun every day, just hanging around the house with my husband, sometimes in different rooms with each doing different things, or watching TV shows/films together in bed. Nothing we do looks like “fun” – in fact we might be the definition of “boring” – but it has been a fun life for us in our own way!

Calvin-and-Hobbes-Summer-Vacation-Comic

As I keep coming back to this idea of finding the good things that fibromyalgia has brought into my life, finding joy in small things is definitely one of the big ones! I feel very lucky to have been given the opportunity, even if it came disguised as fibromyalgia, to realize just how much fun my life is!

Love,

Fibronacci

Getting Honest about Chronic Pain – Part II

Fibromyalgia is like being in an abusive relationship. You are forced to share your life with a beast that throws all kinds of punches at you until you are battered and bruised. You feel isolated, and like you cannot get out – trapped and doomed. Every now and then, it lets up a little, and you think you can have a stable relationship that is perhaps not ideal, but tolerable. But then it comes back with double the force and knocks you back down again. Eventually you realize that you will never be able to have a fully stable relationship, and you live under the fear of the next pain storm. Slowly, the fear creeps into your very being, and kills you from the inside – while this whole time, outwardly, you look perfectly fine.

Chronic pain doesn’t just screw your body up, it also messes with the mind. Regardless of how much I believe in positive thinking, it is hard for me to keep a cheery face and be positive all the time. It’s hard to keep that chin up always when you are at the mercy of something as unpredictable and changeable as the weather. I am afraid to hope for anything now, especially the future. And it doesn’t help that I feel disconnected from my past.

I believe that everybody has their place in the world, in terms of what contribution they could make to it. For me, that was science. It was a job I loved, and I put my heart and soul into it. But now, becoming a “respectable” scientist feels like a distant hope to me.

If fibromyalgia had struck me twenty years from now, when I was an established professor, I may not have been so frustrated regarding my career, because I would have had others to do the hard labor for me. But it struck me at a time when I am expected to put in long hours and work hard and work fast. So now that I cannot perform at the level that I am expected to, I have been practically disowned. Even my boss of five years – who once praised my enthusiasm for science, saw how hard I worked for little to no pay, and admired my work ethic – told me he wouldn’t hire me in my current position. This is despite the fact that I am trying to make up for less work time with better efficiency and task delegation. (I guess I can kiss any hopes of a good recommendation letter goodbye!) It is clear that science (at least, academia as I know it) has no place for slowed-down cripples like me.

I know I can find other ways to contribute with my science training, but my self-confidence has taken a serious beating since I haven’t been able to stay out of bed longer than few hours each day. At one time, I felt I could touch the stars if I wanted to and worked hard enough to get there. Now I feel like I’d just burn my hands if I tried. I don’t know what I am even capable of anymore. In many ways, I feel like I am losing my mind and important pieces of my identity.

Most days I am able to pick up the pieces and move on to forge new paths for myself. But on days when I am both physically and mentally exhausted, I feel like I do not have it in me to carry the burden and just keep trudging. Sometimes I just feel like stopping in my tracks and weeping – allowing myself to feel the loss of a life that could have been. And other times, I simply struggle to stay afloat when I feel everything around me is sinking.

On that note, I am desperately grateful to have a real person to share my life with who can be the sole reason that I fight through the storm to stay afloat. When I am getting beat up by fibromyalgia, the invisible brute in our lives, my husband is always there to tend to the wounds. Some days I feel guilty for perhaps not being a good enough wife to him (though he always insists that I am more than he could ever have asked for). And that guilt, which is nothing but a sullying mark on a beautiful thing, is also a reality of living with chronic pain. As is his feeling of helplessness at not being able to do enough to help me in practical ways.

Yet, chronic pain is also what brought us closer together in a very special way. So in many ways, I am thankful to fibromyalgia for that. And that – finding reasons to be thankful for the thing that ruined the life you dreamed of – that too, is a reality of keeping afloat with chronic pain.

Love,

Fibronacci

 

Questions I have for Fibromyalgia

As a scientist suffering from a poorly understood condition and as a patient frustrated by its unpredictability, I have spent many miserable days and nights wondering about the many idiosyncrasies of fibromyalgia. On sleepless nights, the patient in me has a conversation such as below with the scientist in me:

Patient: Why does bad weather (actually, a change in temperature/pressure in any direction) make my symptoms worse?

Scientist: Do humans have atmospheric sensors in their body like some animals? How does that signaling work to affect pain perception?

Patient: Why does the pain get worse during my periods?

Scientist: What is the connection between hormonal levels and pain signaling?

PatientWhy does the pain get worse at night, right when I am trying to sleep?

Scientist: Is there any connection between the circadian rhythm and pain sensitivity/signaling? If so, what is it?

PatientI wish I could sleep . . . I am so tired . . . (poor sleep makes pain and fatigue worse)

ScientistIs there a feedback loop between the circadian rhythm and pain sensitivity? Why do patients with fibromyalgia experience alpha intrusions and not get restful sleep?

And the quintessential:

Patient: Why me? (yes, I know it’s cliche)

Scientist: What causes inter-individual variation in pain sensitivity? What genes are involved in those pathways and how does environment play a role in the development of the chronic illness?

As an epigeneticist (one who studies modifications on genes responsible for fine-tuning their function), that last question is especially close to my heart. I have a suspicion that a significant fraction of the population is probably born with genes that make them sensitive to pain perception. But only 2-4% of the U.S. population has fibromyalgia. So what factors are involved in determining who with the disposition actually develops the condition?

These are just questions for now. I have no answers for most (if not all) of them. But we need to find the answers. The more answers we have, the better we can treat ourselves, future patients, and perhaps even take preventative steps. So until then, perhaps that “why me” question is worth asking after all!

Love,

Fibronacci

Saving Face with a Chronic Illness

Graduate School is full of overachieving people who care a lot about one thing – their research. That, and their perceived image with regards to their ability to face difficulties.

Crying or any expression of disability or needing accommodations to overcome disabilities (aka not always being 100% self-sufficient) is considered “weak” and people who engage in such are often considered as “not being suited for graduate school.” Therefore we are mainly a clan of somewhat anti-social stoics, who bottle up everything, and then get dead drunk to release it. There is some bizarre irony here that a bunch of scientists (biologists, no less) think binge drinking is a better alternative to crying if you want to let it all out!

As much as I recognize the idiotic nature of the culture, I have to admit that, for the most part, I am one of the stoics. I don’t binge drink to release tension, but I am certainly not particularly good at showing emotions either.

I have many faces, figuratively speaking, and I am very careful about what I show to whom. Part of it, I believe, is a trust issue – I have been burned before and I am careful to not get burned again. I find people (including therapists) are often incapable of understanding the complexity of emotion one might feel, and have the tendency to box you into one group or another, without recognizing that no box might truly fit you. I have found this experience frustrating to say the least, and not one I care to keep repeating. To add to this general tendency of the human population, the graduate school environment certainly seems to select for those who are so wrapped up in one thing – their science – that they are incapable of complex human bonding.

This combination of factors made it very difficult for me when I developed fibromyalgia as a Ph.D. student. I found myself fairly isolated and unable to really explain my condition to many people, including my boss, without feeling apologetic for developing a chronic illness. I am the first to admit that it is stupid to feel that way, but I suddenly felt the need to save face by making sure I am extra efficient with my time and trying not to outwardly show what the pain and exhaustion was doing to me.

The latter largely failed after a time when my mobility started declining. So then I turned to humor but still only told the closest people – my boss and immediate colleagues. They have been generally very nice about it, but I still refrain from truly sharing the impact the disease really has on me. Recently, I even talked about it in medical terms with one of my committee members, who was fairly nice and curious to learn more about the disease – I was proud of this because I wouldn’t have been able to have this discussion a year ago, but I didn’t have a choice now as we had to climb stairs and I was slower than this man some thirty years my senior. Yet, we talked about fibromyalgia as one might talk about a badly infected tooth that needs a root canal job.

Nobody can truly understand what it is like to live with a chronic pain condition unless they either have it themselves or know somebody very close who does (a spouse/partner, for instance).

So I continue to be unable to talk about the havoc that fibromyalgia has wrecked in my life, in person, with anybody other than my husband. I don’t expect this to change anytime soon. Yet I know that there are others like me, in grad school even, who are fighting their own chronic battles and they must all feel like me too. It is doing a disservice to them all if I just stay quiet and keep walking like a character in Metropolis. So I met myself halfway and started this blog. I have only shared it with a select few, but this is the start of me sharing my inner universe with the world outside.

Sometimes I wonder if starting this semi-anonymous blog is just another way to save face, to make up for an imaginary mistake that I did not choose to make. But then I think perhaps this is my way of accepting one of my many faces – the face that’s always in the shadow, the one that cannot be easily named, the one that shines only in the dark.

Featured image: Ruby Tuesday (11X14, oil on canvas)

Love,

Fibronacci