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

 

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9 thoughts on “Getting Honest about Chronic Pain – Part II

  1. I’m very glad you posted this, a lot of these things have been on my mind too lately and I think you have expressed them very well.

    In particular, I wonder if it is really right for society to pressure those of us with chronic illnesses to “keep up” with the healthy people – to me, it’s just as bad as pressuring a healthy person to work 20 hours a day, 6 days a week. We would say that asking a healthy person to work that much is abusive, so why are sick people supposed to keep up with healthy ones?!?

    Liked by 2 people

    1. Thank you for your kind words! I am glad you could relate to the post.

      You raise some very good, and very insightful questions. I think it would qualify as abuse if we were to be physically forced to keep up with healthy persons. But as it stands, we are simply expected to do that (emotionally/mentally forced?? By others? Ourselves?), in order to be competitive with the healthy majority. Kind of like if lab equipment like pipettes were designed for right-handed people, or like some right-handed desks for instance, and it is expected that left-handed people will just have to get used to using them. If we cannot work at the level that is considered the “normal” or the benchmark, we are at a distinct disadvantage. Probably comes closer to discrimination than abuse at its current state – neither of which is right and should be acceptable to society!

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  2. This really resonates with me, for reasons I have shared with you before. However, with the wisdom of hindsight, I would like to share with you a few things I have experienced over the years. 1. I struggled intensely not only keeping up with the normal folks, but actually at being good to excellent at my work, for 12 years, because I did not have a diagnosis, and didn’t know it would be perfectly kind to not excel and to forgive myself. I gave up, crashing after the 12 years of this battle, inviting advice and speculation from my social and work circle. My diagnosis came another 8 years later. So a timely diagnosis is a really really great thing. The disease will take its price (toll), but the diagnosis validates your pain, explains your failings and allows you to be kind to yourself. And you can finish what you are doing, or leave at your own chosen moment, instead of having to be taken out on a stretcher like me. It is a terrible journey when you are not kind to yourself. 2. I struggled with the if’s and if only’s. Even without working, I applied the knowledge of my previous learning and the mental skills I had, in other ways, and at certain crucial moments in life. At one point I realized that it had not all been in vain. Each experience and each lesson had its own place and value. With that came the phase when the resentment at the unfairness of it all also burned itself out and only the acceptance, calmness and gratitude remained. 3. After years of contemplation, I was able to create a life’s statement/ mission – a sentence that defines me: what I like to do not just at work, but in daily life; when given a choice, what I am drawn towards; what I feel satisfied about, that general mission that underlies not only what I enjoyed about my work previously but also what I enjoy about my interactions with the world in general, and something that people appreciate about me – even who are not my superiors or colleagues. It was an enlightening moment -when all that I have enjoyed doing, all that I still enjoy doing, all that I have lost and gained, all fell into place. I could finally separate my own identity from my work identity, I could separate my life’s purpose from my lost career, and I could separate my life’s calling from my major field of interest. I could exactly work out the intersections and separations and a new phase began. Just be kind and patient with yourself… and hang in there. Good wishes. Sorry for the long comment. (HUGS)

    Liked by 3 people

    1. Please do not apologize for the long comment! I appreciate the time you have taken to share your experience and wisdom with me. And I want to thank you for understanding me so well!! 🙂

      (1) A relatively early diagnosis definitely helped me learn more about the condition and how to manage it. That’s when I slowed down, and since then have been doing much better. So you’re right, kinder is definitely better!! It’s just that sometimes the type-A in me gets angry with myself for not doing *enough* (whatever that might be!). And I need to learn how to quench that better. (2) I am trying to tell myself the same thing right now. That eventually everything I learned will have its own place, and I will not feel like anything is really gone to waste. I can already see how seemingly-bad decisions at the time have worked out well for me in the future! For example, I had the opportunity to go to a top-ranked graduate program in the country; I even accepted their offer, but then had to drop out and stay at my current university with my old lab for various personal reasons. Back then, I didn’t know the boat that I would be in 2-3 years from when I made that decision! But now with the benefit of hindsight, I really doubt any new topnotch place like that would have been as welcoming of my slowness as my current lab has been. In the grand scheme of things, they have been really nice to me. I have friends for colleagues who are good to me, and a boss who hasn’t kicked me out yet. So now I am only waiting for those sporadic moments of what-ifs, and anger, and guilt, and frustration to die out, so I can spend more time feeling the acceptance and gratitude. It is just so hard to stay that way all the time for me! (3) I loved your idea of a life mission statement!! Would it be possible for you to share it with me sometime? I know what you are talking about, because I have realized that I need to do the same thing – separate my work and major field of interest from my *true* self and its purpose – I just haven’t gotten there yet. 🙂 Any tips on how to get there (other than time, lol)?? 🙂

      Thank you so very much for sharing your kind thoughts with me! It is always a pleasure to talk to you! 🙂 **Hugs**

      Liked by 1 person

      1. Thank you for your words. Apart from a certain limiting “time”, inputs from the experience and knowledge of others – books, teachers, guides, friends, fellow-travelers… can speed up a knowing or learning process. So, when you know the adversary (disease) and can draw on the existing pool of knowledge and experience about it, you are already cutting short the path to certain milestones of wisdom. Does not take away the physical pain – but does decrease the mental anguish. In our situation, we will usually grab any crumb of respite that comes our way 🙂 If my experience can help you in any way at all, that itself is one worthy purpose of life; I will surely mail you. I too enjoy talking to you and reading your posts very much. 🙂

        Liked by 1 person

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