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

In my last post, comparing my experience being a scientist in government vs. academia, I had promised to talk a bit about how I got there. Admittedly, it’s a bit surreal to me, because this time last year, I was practically despairing that I might not have any career at all, forget one in science. Having experienced the pressures of academia first hand, I knew it wouldn’t be conducive to my health to continue in it. But it was immensely daunting to seek a life after academia as a scientist with a chronic illness.

In this series of posts, I will discuss my story — it has been a long, and in many ways, is an ongoing journey to redefine my identity. But before I could do anything else, I first had to assuage my feelings of guilt for wanting something different out of my life in the first place.

Step 1. Overcoming feelings of guilt and loss.

Ever since I joined my lab, it was made clear in no uncertain terms that I was being trained for an academic career. From the boss’ point of view, that’s what a graduate program is designed to do. It’s an apprenticeship model, where your mentor trains you in the arts and crafts of the trade, so you carry their mark forward as you grow in the field. That is your job, and your responsibility.

So when my body couldn’t handle double the full-time workload that is expected of the field (I was probably working under 40 hours at the time trying to get my health back in some sort of order), I was immediately relegated to the side. Once a promising student, I was now a waste of time; a wayward kid; a lost cause. And I internalized some of that at first, and felt guilty for letting my advisor down. I knew he had high hopes of me, and I felt guilty for not being able to live up to it.

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Guilt is a fire that scorches the soul

But there was another kind of guilt at play, one that hit at my core. Academia is still a very male-dominated field; I felt I once had the potential and motivation to add to the roster of successful women in academia. But there are even fewer disabled and chronically ill scientists in the field. We can be ostracized at best and actively discriminated against at worst. So we hide our disabilities, afraid to stand up to those who look down upon us for fear of ruining our future prospects.

I felt like I should try to make it as a successful academic scientist, even more so now that I had fibromyalgia, so no one could doubt our scientific acumen! Once at a stable point in my academic career, I could raise awareness for our cause without fear of retaliation; mentor more students with disabilities; try to change the culture in academia that sees us as lesser mortals. I felt like I had the responsibility to stand up to the establishment that had looked down on me. Walking away from it felt like walking away from a battle, like they had defeated me and my spirit. And I felt guilty for giving up on all the future disabled or chronically ill grad students I might have been able to help.

It took me a long a time to see that these feelings of guilt were misplaced. It is my life and my body, and my first responsibility is always to myself. To keep myself healthy, and active, and in a mental state to be able to enjoy life. It is my responsibility to find a fruitful direction for my own life, one that suits my current needs.

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At the edge of all light

To feel beholden to others’ expectations of me is only a noose I held around my own neck. I realized that is never how I lived my life so far, and it would be a mistake to start now. As far as thinking of my own past dreams or future hopes are concerned, they only serve to make me feel worse. They do no practical good in helping me carve a way forward.

I also realized that advocating career over self-care is hardly being a good role model! Especially with a chronic illness like fibromyalgia! How can I help other people if I cannot even help myself? Perhaps my limited energy is best spent raising a candle to the issues from the outside, rather than burning in the fires on the inside. It was time to let go of my misguided sense of pride.

The first step in any journey is often the hardest to take, but also is the most important for it sets you on a new course. Once I was able to get over the feelings of guilt over leaving the career I strove for for so many years, I felt like a fog had just cleared from my view. By the time I graduated, that was perhaps my single biggest accomplishment; bigger, even, that the Ph.D. And when I finally could see the different directions my career could possibly go in, I felt the glow of a new hope warming a heart grown cold and scared.

In the next post(s), I will talk about the specific steps I used to retrain my brain to think of new possibilities and new directions. I know when I was seeking some of this information, I had none I could turn to. So I hope that this series of posts will reach future grad students and scientists in a similar boat, and I hope they find some value in it.

Gentle hugs,

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

 

Slow and Steady Stay in the Race

Yesterday, I spent some time meditating and reflecting over the last couple of years of my life. It was brought on by a conscious decision to slow down my pace as the stresses mount on me towards the end of the semester causing a steady decline in my health. Though I sometimes feel guilty or silly for slowing down, I keep telling myself that it is not a crime to put your health before your work, and take a weekend off to recharge. In the long run, I think that will be the key to my finding some level of normalcy in my life. And looking back, I think it already has!

Featured image: Finding Light (9X12, oil on canvas). I could not think of a more appropriate painting that could possibly describe the journey that I write about below.

A year or so ago, when I hadn’t learned to slow down yet, I was super-miserable all the time. Every day I would force myself to rise even though I felt thoroughly unrefreshed. I ignored the stiffness in my body that screamed in pain when I overruled its need for rest and forced it into some clothes and shoes as I made my way to work. Despite the gallons of coffee, every afternoon, I was close to passing out from exhaustion. I would have to crawl my way home before I collapsed to save myself the indignity of passing out at work (which has also happened before). I was on a non-stop roller-coaster ride where I ignored my body to accomplish more things, but then I would hit a new low and not be able to rise from bed for the next few days. I worked my ass off the days I was at work and then wasn’t able to work at all for several days after. I needed at least one sick day every week on average, especially after the days I taught two classes back-to-back, 2-3 hours each. Several times, I thought of quitting everything, wondering if anything was worth it anymore.

Then at one point, I learned better. I don’t know what pushed me over the edge – maybe it was a missed opportunity to attend a conference because I couldn’t get up from bed that day – but I decided to quit that lifestyle. For good. I slowed down. I went to work later than usual, and gave myself time to “thaw” and meditate in the mornings. I cut my work hours down to 6-8 a day (instead of 10-12, at times 15, before). I switched out my chair for a slightly more comfortable one. I accepted the help of a pillow from a friend. I wasn’t shy about using a heating pad at work – which helped a LOT! I got a box and put it under my desk, ahead of my chair, so I had make-shift chair-cum-recliner to help ease the pressure on my legs. Sometimes, I use my electro-therapy machine for a quick massage at work and try not to feel awkward using it. I started taking more weekends off to recharge than I ever did before. I spent more time with my husband, learned to relax more, explore the outdoors, exercise gently and try to be happier outside of work in general. I started thinking about quitting the crazy scientist routine and finding a job I could be happy in (aka, one that is sciencey), but one that would also allow me some guilt-free time off.

This was not an easy change for me. And I would say I am still in a transition state, because I still feel guilty at times about the time I take off from work and feel the need to push myself harder than I should. BUT . . . what I have been able to do so far has already helped! While I still have ups and downs, they are not nearly as dramatic as they used to be. I feel calmer and more grounded in general than I ever did before. While I still feel an energy crash towards the end of the day, I feel the blow of the crash less harshly than before. While afternoons are still rough on me, I now use some tea and meditation to try to calm my body instead of the gallons of coffee I dumped inside me before. And I have fewer days when I feel like I am about to pass out from the exhaustion. I also need to take fewer sick-days off from work now that I work less everyday. In other words, I am starting to find a steady state for myself, that is lower than what it used to be, but it also means I have less far to fall when I do, and I fall less frequently!

From time to time, my old self still pipes up and wants me to speed up and stay rushed in order to win the race. But when I took life so fast, I failed to enjoy the sweet moments along the way. It’s like my surroundings were blurred, and I missed out on enjoying the fruits and flowers by the road-side. And then I hit a point, where I realized that if I didn’t slow down, I wouldn’t even be in the race! Fibromyalgia changed my perspective on life in general. Who cares if I win the race or not? (Why the hell are we running it anyway?) Even if I did win, I was losing so much along the way that was it even worth it? Life with fibromyalgia feels more like a marathon than a sprint. The slow and steady may or may not win the race, but at least they can continue to stay in the race. And maybe, just maybe, that’s more important anyway!

Love,

Fibronacci

On Ducks and Perspectives

It seems somehow appropriate to discuss my aquatic physical therapy program (sort of, anyway) with a bunch of duck pictures. So here’s one to start it off with!

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White Ancona Duck

So because of my aquatic therapy program (twice a week), I am having to miss work a lot. Basically, I am working part time or less two days a week. I feel like I should make up for this by working longer hours or working more over the weekend. But the truth is, even though I am not working on “work” stuff, driving 20 minutes in each direction plus exercising plus showering before and after is all work for me. Those are all eating up slices of my energy pie that I would otherwise devote to work.

Lately, my whole perspective on my work has kind of changed. In the past I used to be perfectly happy working 10-15 hours a day, including most weekends. Last year, when I still hadn’t learned to quit this lifestyle completely, I was always miserable. I slowly cut back and now I feel like I am doing much better in general (fewer massive flares and lower daily pain levels on average). And now, I feel like they don’t pay me nearly enough for me to go back to being the way I was before!! At one time, I may have said I find joy in science. And I still do, don’t get me wrong. But if you asked me the top thing that I find joy in now, I would say it’s in not being in constant misery!

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This duck couple (male/female, yin/yang) just makes me think “balance” – that’s what I am still in search of. And then finding peace in living that balanced life minus the guilt!

I never knew how much I took for granted until I wasn’t able to do them as easily one day. Hell, some days I am just grateful for being able to get up and walk to bathroom! But do I still feel guilty about not accomplishing as much as I once used to? Yup. Do I get stressed that one day I might tick my boss off enough that I have to really call it quits? Sometimes. Am I going to kill myself over it? Not physically anyway; I have been convinced that that’s not worth it. The mental anguish, I imagine, will take longer to settle.

Well, there’s that titular perspective for ya! At any rate, I hope you at least enjoyed the (equally titular) ducks!

Love,

Fibronacci

Balancing Positivity and Honesty

A.R.D. warrior has a couple of very insightful and truly wonderful posts about fighting the guilt that the invisibly ill feel and why it’s OK, not to be OK. When I happened upon these, I could have really used a heavy dose of the major take-home points from those articles:

  1. You don’t have to prove to others that your sickness is real or what it does to you.
  2. You are not alone in feeling guilty and it is possible to reduce its impact on you.
  3. You cannot be OK all of the time – just the nature of the beast – and that is alright!
  4. Staying positive about your present and future doesn’t mean you need to kid yourself that you do not have a chronic illness to struggle with. There is a balance to be struck between being positive regarding your prospects and simply being honest.

Reading the two articles caused a flood of thoughts in my brain. I cannot thank ardwarrior enough for putting in words so much of what goes on in my head! So much of what the articles talked about applies to me, that I felt it warranted a sincere discussion.


I am notoriously incapable of admitting when I am not doing so hot, especially to other people. I used to try to fool myself the same way I try to fool other people, but I am getting better at that. I am getting better at acknowledging when I don’t feel so good, and taking steps to stop myself from getting worse. Sometimes they work, sometimes they don’t. And when they don’t, I try to be honest regarding my feelings of disappointment and guilt. Sometimes I cannot help but let all the guards down, break down and feel sorry for myself, admit to wanting to give it all up (whatever “it” really is), and just let my husband hold me (gently) until I feel better. BUT . . . I still cannot come close to admitting to others how I truly feel. I could be in the midst of a massive flare, and it could be obvious to everybody under the sun that I might be ready to crawl into a pre-dug grave; but if someone asked if I was OK (with all good intentions and never in mockery, I might add), I have an automatic speaker that comes on through my mouth that says “I’m OK.” The other person obviously realizes it’s a lie, and either withdraws from further questioning or asks if I’m sure. If they go the second route, I either say “Yeah I’m fine” and rapidly change the topic/awkwardly pretend I am occupied by something else to stay and talk, or say something on the lines of “just tired.”

I know this is a personality trait that alienates people. They are trying to be friendly and kind, and I am rejecting their advances to reach out to me. I am putting myself in an isolation chamber when I need not. So then why do I do it? Why do I build a wall around me and refuse to let others in? Why am I so resistant to reaching out for help, or even just accepting the help that is offered, when I am often the first to reach out to others if they are ever in need?

I suppose part of the truth is that I have been burned before. I have reached out for help to have only found myself ridiculed. But the whole truth is a lot more complicated than that. I am usually good enough about living behind a public mask, so if you had to ask me if I was doing OK, I am so far from doing OK that I wouldn’t even know where to begin. I suppose an easy answer is that I am in a flare. But few people understand what that 5-letter word entails. (If you are lucky enough to not know it first hand, I touch on it very briefly on a previous blog post about what fibromyalgia feels like.) Even if they did, they would probably just feel awkward and not really know what to say or do, and I hate putting people in that kind of a position. I am also not quite ready for others to feel sorry for me, though I allow myself that luxury every once in a while. Sometimes I feel guilty – pure and simple – to admit to being miserable when I am so young and have it so good compared to many others. I feel like I have no right to complain. Finally, I think I am just plain ol’ afraid of what might happen if I completely give into admitting the misery every time I feel it. Not admitting wretchedness openly is my way of keeping up a face that may not be entirely true; but at any rate, it gives me the semblance of having some power and control over myself. I am afraid of what it would do to my soul if I gave up that last shred of power. (Feeling a loss of control over my own self due to the unpredictable nature of my condition has been a big issue with me, and I have talked about it a little here as well.)

Another aspect of this issue worth touching upon is the idea (that is backed by science) that sometimes distraction does help to reduce how much physical pain you feel. The pain is kind of like a baby throwing a tantrum. The more attention you give to it, the more demanding it becomes. When you are putting up a face, you are forced to focus on something other than your pain and misery, which may not make it go away but can certainly reduce how much it consumes you. For those of us with chronic illnesses, we know the pain will never completely go away! So all we can really do is minimize how much effect it has on us mentally and emotionally.

As an example, I was feeling on the poorer side of my new normal on my birthday some weeks ago. I hated to admit this to anybody, even to myself to an extent, especially on a day when everyone was obviously trying to be nice and make me feel special. So I faked it for the most part, and was extremely touched by everybody’s gestures. I was glad to have not let others down when they were trying to do something nice for me (another one of my big “things”). But, as ardwarrior says, there is a balance to be struck here. And I tried as much as possible to rest whenever I could and not push myself too hard. I treated myself well, and accepted support (though only from a select few) when I felt I needed it. All in all, to be honest, I think I managed to have a pretty good day! And I was proud of myself for it too!

The whole event gave me a mental boost that I am MORE than my illness. I am not a fibromyalgiac (this is where I coined the term, if you are curious). I am a biologist, an artist, an amateur photographer, an avid reader, who also enjoys writing (mostly prose now, but once upon a time I used to write poetry), takes an interest in archery, and was probably a fish in a past life . . . AND, who also happens to suffer from fibromyalgia. I may not have the level of energy that I once did, or be able to do all that I once dreamed of. But I am still capable of doing the things I love – though in a different way, and I still need to find that way. In an odd way, developing fibromyalgia has actually enhanced me as a person, but I will talk more about that in a separate post.

So . . . have I found the balance? Not sure, hopefully a little.

Love,

Fibronacci

 

A Tale of Turtles

After a night of poor sleep, and driving around all morning, my brain is about as murky as the water these turtles are swimming in. I start a new aquatic therapy program next week that I was evaluated for today by a physical therapist. As usual, after all the prodding and poking, I am worse now than how I started off (which wasn’t so great today to begin with).

Incidentally, I also felt like a deplorable hypochondriac today looking at an image of the human body trying to click on “pain areas” and trying to describe the type and intensity of my pain. I felt like all the boxes applied to me at some point or another! I was somewhat embarrassed though, so we decided to go with the major/focal areas. It was kind of exciting and depressing at the same time to think that 3/10 is the best pain management score we can aim for even for the most basic tasks like standing to teach (granted, that’s like ~3 hours at a time) or doing stairs or working at a computer or just washing my hair (again, granted, I do have a LOT of hair)!

I hate that I am going to have to miss another day of work but I needed the rest desperately today. What is it about us graduate students feeling so guilty about taking time off for ourselves?? I am sure there are other ways of making our lives productive (even scientifically productive) without always necessarily working on our thesis project all the time. But then the thesis is our baby, and who doesn’t feel guilty about neglecting their baby? (Whether or not it is healthy to make your thesis project your baby is a whole another discussion and I am not even going to go there!)

I need to keep reminding myself that just like a mom who does not hover over their child 24X7 is not a “lazy mom,” I am not a “lazy graduate student” for taking a day off to recover my strength. Yet I know that that is not a popular sentiment in academia. As understanding as my advisor can be regarding my situation, even he gets frustrated with my recent slowness and absence. I cannot blame him for that – sometimes I feel exactly the same way about myself! At least, he has enough faith in my ability to do science to allow me to complete my Ph.D. at my current pace. And for that, I will always be grateful.

Love,

Fibronacci