When I learnt about Voices of Academia, I first thought: What an amazing idea! My second thought was: Who would want to hear about me, a postdoc suffering from chronic pain, who is still finding her way through it? But then I realized that often the first slide in my talks shows the percentage of people suffering from chronic pain: 1 in 5! And we still feel ashamed, lost and voiceless in life, never mind in academia.
So here I am, thinking that since academia is already hard as it is, my experience might resonate with someone, and help in some way if you’re dealing with chronic pain. I am a big believer in people’s own paths and mistakes, but I also believe that you feel less bad about it when shared and understood. I will share here my path in academia, focusing on the good and bad things that a life with pain has given me. Yes, there are some good ones.
I have lived with chronic neuropathic pain for the last 13 years, though I was just diagnosed three years ago. I am a molecular biologist by training, in love with science and nature. My journey with pain started when I was 20 years old and studying my Bachelor’s degree in biology. I developed a cyst compressing my sciatic nerve and I don’t even remember it now, but the pain was so bad that when I was offered surgery to remove it, even with the risk of losing my mobility or another cyst reappearing, I just took it. I wasn’t trained to live with pain. I just wanted it to go away and keep on with my undergrad fun and my long mountain hikes. Is anyone trained to live with pain after all?
Surgery worked, the cyst was removed, and I was pain-free for almost a year. Of course, the cysts came back, making my pain worse, and my life has been totally different ever since. I lived several years with intermittent pain, got another two surgeries for ‘temporal relief’ and tried all the drugs available to me to make it go away. All of them. This was all during my Bachelor’s, then Masters and then PhD years. It was incredibly hard. Looking in hindsight now, what was normal for me at the time was anything but.
During all those years, I didn’t have a proper diagnosis. Nobody mentioned chronic pain. Nobody said that it wasn’t my fault, or that my nervous system was already under alert and reacting to anything that should be innocuous in other circumstances. Nobody said that my stress was impacting my pain. I just had something wrong pressing my nerve and had to live through it.
Reaching Rock Bottom
All those years, I just pushed, pushed and pushed. I kept feeling guilty for not pushing enough, for being weak, for not working enough hours, for not doing enough experiments. I blamed myself for not being able to think properly (what I now know to be brain fog) , for not reading enough papers. I pushed aside the idea of asking for help and I pushed away all my people because I couldn’t bear others misunderstanding what was happening to me: I didn’t understand it myself!
Pain made me go through some really bad times: My first year of my PhD I was pain free from my last surgery. I worked hard and enjoyed the job, the lab, my supervisor, my colleagues… It was great. But then, the pain came back. The PhD became really hard. I was very lucky to have an understanding supervisor who supported my flexible working hours (not a common thing in Spain), but still, I pushed and pushed. I felt I had to prove I was okay when I was really not. I remember one time when I was due to give a lab meeting, and just the day before, I had to go to my supervisor’s office and tell him that I couldn’t do it. My brain fog was so bad that I couldn’t even explain my research topic to my peers. He cancelled it without a problem and told me to go home and get some rest. I left crying, trying not to show how freaked out I was by not understanding what was happening to me. That’s the worse part of an undiagnosed chronic condition. The not knowing.
People hate labels. But when it comes to disease, we all need to know what is wrong with us. We all need to know that it is not our fault, and that we can do something to improve it. That was my first ‘reaching bottom’ point in my mental health journey, but it was surely not my last.
The following year I just navigated through my PhD focusing on the science and enjoying the job in ‘survival mode’. I gave up most of my hobbies, I stopped communicating with my friends, and I stayed in my own bubble. This is something that I regret and believe that we, as people in pain, can always improve. Try to not withdraw from your support network; they are essential.
I managed to start getting out of my rut, thanks to my dad, who pushed me to know and work on myself. After some months, I managed my pain pretty well with yoga, swimming and regular talks with my dad, who always understood me. During my last PhD year, he died in a sudden way and that was my second time hitting rock bottom. I had tons of offers of support from my family and friends that I didn’t use. I would go from home to the lab, do my experiments, not talk much, and then back home straight to bed. I was in so much pain (both physical and emotional from grieving) that I couldn’t enjoy a new city, my partner, my friends.
At this point, pain gave me the best breakthrough in my life: I was forced to ask for help. This might seem trivial to many, but I was raised to be a strong, independent, and proud woman who shouldn’t need help from anyone. Going to a psychologist and asking for help was the hardest and best decision I have ever made. It helped me to finish my PhD with a bit of joy and get strength to look for a postdoctoral position in the UK (my academic dream). I was still in a lot of physical pain, with no explanation for it, and I looked for a long-shot surgery to help ease it before ‘my big academic jump’. This last surgery not only didn’t improve my pain, but actually made it worse. Nobody could give me an explanation for it, so there I was, preparing for a viva using crutches and in excruciating pain.
I started my new job only one week after I started walking without crutches. I wasn’t ready at all. New country, new job, new field, new pain… This was when I discovered that academia is not ready for people with chronic illnesses. We don’t usually facilitate an open dialogue when we see someone not performing properly: instead, we judge. And that’s how the academic environment needs to improve. I think academia has normalized unhealthy behaviors as a proof of someone’s competency, as though we are required to survive in a toxic environment to prove we are ‘successful’. But stress is not healthy. Exhaustion is not healthy.
I also think that, many academics are good people, and when we know that’s someone’s struggling, we help. I find this a double-edge sword: We don’t like to show we are human as we fear it might make us look weak. Nobody likes to talk about their problems and illnesses. This was certainly my mistake. I didn’t report my pain problem properly, and during my first postdoc months, the brain fog and pain flare ups were seen as laziness and incompetency. My supervisor wasn’t trained to help me and I left after 8 months, since it was the first time in my life that I wasn’t enjoying science and academic life.
Life got ‘interesting’ from that moment on. It became clear to me that, as an academic, I needed to perform well but also understand what was going on with my life. I started to do some research on my pain while looking for other postdoc positions. I applied to lots of molecular biology positions and received a couple of offers. One day, I remembered my dad telling me to investigate my own disease in the lab, and I decided to pin my future research on exploring my current health problem.
I still don’t quite know how, but I convinced my current supervisor to give me a position investigating the molecular mechanisms of chronic pain. Before taking the job, I was clear about my pain (as clear as I could be, without a proper diagnosis) to my supervisor. This was the most difficult conversation I have ever had. Me, acknowledging I had a problem and that, sometimes, I wouldn’t be able to perform as I should! It was hard to ever imagine I could have such a frank conversation with anyone.
At the same time, I was able to go to a Pain Clinic in London, where after some tests, I was finally diagnosed with chronic neuropathic pain. I was listened to and supported, and even though I was told there wasn’t much that could be done about my pain, the diagnosis changed my life. My new job allowed me to do a lot of reading that was part of my research, but also helped me understand what was happening to me. I learnt that research was still years behind effective treatments (yet another reason to feel useful in my new job!). I learnt that chronic pain was a psycho-bio-social construct, meaning that while biology matters, so does your mind and your environment. Last year, I was invited to participate in a Pain Management Programme (PMP) in the Pain Clinic. After 12 years trying almost everything, it was the only thing left to try, so I gave it a go even though the time investment was quite big. But having talked openly to my postdoc supervisor made me feel less ashamed about asking for the days I needed for the PMP.
The PMP was the best investment of my life. It made me able to take accountability for my own life and gave me tools to navigate it in a happy way, even with pain. I could write another post about this, but accepting my pain happened thanks to the PMP. It also helped me keep up with my exercise, acknowledge my stubborn and proud mindset, and made me realize that I had a lot of trouble communicating my pain to my loved ones.
Although I was open with my supervisor when taking the job, I struggled a lot to talk about my pain with my peers when I had flare ups. I still do. As I mentioned earlier, academia is competitive. Nobody wants to show their weaknesses, even if they are health-related. I can share with pride that I have always encountered a very positive attitude from people towards my pain, and my colleagues and friends have always supported me. Communicating my own pain is something that still triggers me: it reminds me of my first cancelled PhD lab meeting, my failed postdoc experience, my problems pacing at conferences where I should be at 100%… I feel I could be much better at this, and I keep working on it, but I try not to compare myself with others.
All in all: I am currently happy and managing my pain. And I can say that my academic job as a pain researcher is the core of my pain management. I get to study and learn the science of pain, which is a proven way to make people in pain manage their symptoms better. As I mentioned earlier, everyone wants a label for their illnesses (that’s why diagnosis is essential) and understanding them always helps. I have also learnt (the tough way), that open communication with my supervisor and peers is crucial for me to do my job. I still struggle sometimes with pain management, like maintaining my exercise activity and pacing myself properly when there’s a lot of lab work. It’s so easy for me to get hooked on the science and experiments that I forget that pacing and taking care of myself is essential for me to do my job properly.
However, the skill I’m most proud of developing in my academic path is asking for help, and for space when I need it. I learnt to ask for help by necessity, but with time, I can see that it’s allowed me to openly communicate with people, learn from other pain patients, and even be more collaborative in my own research. Communication is key.
Below some blogs and resources, I find useful when I have a flare up or struggle:
Still the best representation of a person in pain I have even seen
A recent blog post that has resonated with me as an academic with chronic pain
Free PMP tools to live well with pain/
A chronic pain blog post about living in pain and managing it
Curable app: Worth the money imo! An ongoing PMP including pain science, exercises and meditation…
A public campaign trying to educate both Health Care Practitioners and people living with pain, to help them manage it
Sara Villa is a postdoctoral researcher at King’s College London, where she investigates the molecular basis of chronic pain. Her research focuses on epigenetics and RNA sequencing techniques, and she’s fallen in love with data analysis and open science. She has recently graduated from Westminster hospital Pain Management Programme, learning how to live well with her chronic neuropathic pain, a condition she developed 13 years ago. She is passionate about sharing her experience and helping others to be happy despite the pain. She also adores to discuss science. You can find her @VillaScience in Twitter.