It’s tempting to present myself as a very well put together, calm, collected, successful woman (with vulvodynia). I could fall in love with the image of myself as the person who is so strong that nothing fazes her. I imagine that if I were that person I would just incorporate the pain into my sense of self and move on. My life would still be completely my own, entirely under my own discretion. Pain would just become one more little thing, like groceries or a period that must be incorporated into my daily life. Instead of pain having two parts – the physical and the psychological. My image of the ideal woman or girl living with vaginal pain would avoid the psychological ramifications of a life lived in pain and be free to just cope with the real physical pain.
That image of the perfect woman probably isn’t helpful to any of us who live with pelvic pain, it definitely is not useful for me. But acknowledging that I wish I was her is probably necessary – at least that way I hope to prevent her from creeping too much into my thoughts without my awareness. I don’t want to come across like I have figured pelvic pain out. I haven’t. Chronic pain is a path I walk that changes every day.
My life, My work, My self
In the early 2000s, I started graduate school in sociology and I am currently on the brink of finishing my long-awaited dissertation. My research focuses on how educational and social experiences in schools promote positive or negative adolescent development with a specific focus on health behaviors like weight control. More generally, I am interested in how individuals use their education to gain health advantages. I never knew I would learn to use the research for my own survival through barrages of tests and overwhelming experiences with doctors.
In the US, there is a strong positive connection between education and health – meaning the more highly-educated you are, the more healthy you are on a variety of measures of health, like mortality (how likely you are to die), morbidity (how likely you are to have a serious disease), and self-reported health (how healthy you feel). My research interest is in how experiences early in the life course, while kids are still in schools, form a foundation of knowledge that people are able to draw from to gain better health for the rest of their lives. You may think that income or health care is the reason why the higher educated have better health (because those with more education are more likely to have higher, stable incomes and are more likely to have stable or better access to health care), but the link between education and health is much more complicated than just that.
There are several concepts brought up in the academic literature on the link between education and health that have been particularly useful to me in thinking about how I need to deal with the medical establishment in order to optimize my chance of getting the best care possible in the case of my vulvodynia. An article that has struck me every time I have read it, is an article by Annette Lareau. In it she describes how the way individuals interact with doctors highly impacts the doctor’s ability to give high quality, salient advice. The idea I take from her article is that people who are willing to be honest and blunt with their doctors (however difficult that may be, which it often is when the subject is vaginas or sexual dysfunction), will get better medical attention. Another concept that has stayed vividly in my mind comes from the work of Catherine Ross and John Mirowsky – the idea of personal control. When individuals feel like they can control the direction of their lives, they are more likely to have better health outcomes. Personal control is a key concept in health – if I don’t believe I can change my illness, then giving up may be very tempting. Instead, if I do my best to change my life to maximize health and minimize illness as best I can, I am most likely to have the best mental and physical health possible. Personal control also bleeds into the idea of empowerment – that I can take charge of some parts of my medical decision-making and become an active participant in my healing.
Now let me rant (at least a little) about being a Patient Expert
In the case of vulvodynia, where treatment can take years and patients like me have to endure chronic pain for a long time, there may be times when the patient may know more than her doctor (if she chooses to pay attention to the trends of her body and if she chooses to get out there and inform herself about her disease and her options). A good doctor is key, but active participation on the part of the patient may make significant difference.
We have a tendency in this culture to revere doctors and “modern” medicine. For me, questioning my doctors became the most important thing I could possibly do. Feeling in control, empowered, and confident enough to question authority became very important. Ironically, or at least to me it sometimes felt ironic, I was often crying while questioning my doctor’s latest ideas or her choice of drugs to treat my latest infection. But crying, feeling upset, does not oppose control, empowerment and confidence. Becoming comfortable with my vulnerability that arose from being in pain, needing my doctor’s help, and the stress of also knowing I needed to keep my head in the “game”, was important too.
I am currently almost five years into my journey with vulvodynia. For a long time, I really did not want to identify as someone with vulvodynia, and so I didn’t want to read too much about women’s experiences with it. It sounded too horrible. What if that became me? What I really wanted to know was that there was a finite deadline, an end in sight. Reading about women’s experiences weren’t guaranteed reassurance – until I had accepted myself. And I was really scared. Finally, I began to reach out and make connections. While there are people out there who are overwhelmed by their pain and who may overwhelm you, there are also people out there so full of amazing health information, support, and open ears to listen to your sorrows or triumphs – it can really help (maybe some other day I will rant about the importance of social support to health). There were also success stories out there. Women got better? WOMEN GET BETTER! Sign me up!
It took time, and the help of a wonderful team of physical therapists and my acupuncturist and me taking good care of my health, to start healing, but slowly things began to change. I went from never being able to sit, to being able to sit three hours straight, to eventually being able to sit all day at work (but of course taking regular walking breaks to take care of my pelvis). Certain other things came back to me – like my sexual desire – with time and work with my caring partner. Life also became easier because I adapted – I have a huge wardrobe of skirts, slacks, yoga pants, sweat pants and all things loose and comfy (before vulvodynia I owned one skirt). Though clothes are always challenging (because some days any clothes can hurt), I have options that help me feel better about the fact that I can’t throw on my favorite jeans.
No one wants to think that they will have to live with chronic pain, but sadly (because I have see too many of my friends get sick with serious diseases like cancer), I realize that health is a privilege that many of us don’t get to have. Pain is awful. But I have been given this one life. I feel my only choice is to make of it what I will. I can choose to compare myself to my seemingly “healthy” friends, envious of their jeans-wearing carefree ways…or I can recognize the reality: I don’t know if that woman is suffering from vulvodynia or pelvic pain even behind her jeans. If she doesn’t have pain, maybe she has something else – some other silent illness she feels sorrow over that I don’t know about. Maybe I shouldn’t judge. Maybe I’d rather just focus on what I do have. Focus my energy on my healing. Of course with a few temper tantrums about the injustice of it all thrown in (I am not perfect), but a girl has to have a mindset to deal with something so frustrating and constant as chronic pain.
Though there is nothing romantic about surviving something horrible or difficult, I think its true that through life’s difficulties we learn new things about ourselves, maybe even about our fears, loneliness, and hopefully our ability to give and accept love. I have been most afraid, most alone, and also most in love while having vulvodynia. I have learned how to stand up for myself, how to make medical decisions on my own, how to be hysterical but still make sense when speaking on the phone, how to cry quietly but visibly while I explain my situation to someone new, how to allow myself the space and freedom to get a bit fucking upset about this every once in awhile and how to continue living my life with joy and abandon. I have learned to be brave, to tolerate uncertainty (at least more than I once could). I’ve learned to make the best of a difficult situation and I’ve learned that priorities and living exactly how one intends to live are really important. I also have gotten to the point where I can talk to doctors without getting scared, and I can talk about being in pain (usually) without instantly crying. I have changed, and I like who I am.
For the record, and to spread a little hope, I consider myself 90% better…I rarely have to think too much about my pelvis, by which I mean I can do almost anything I want and feel no pain. I occasionally have flare ups, and sometimes they depress me, but I have also learned that a flare doesn’t mean I am regressing back to pure pain hell. They too will pass. I just have to be more stubborn than my pain. Stubborn. Now that is a test I can pass! One final thought…I recently, for the first time, asked my physical therapist, how my pain compared to most people’s pain…I add this to give you perspective. While it is true that there are people who have situations that are much worse than my own, my pelvic pain was not insignificant. In fact, I have seen some pretty dark painful times. My message in this moment of pain comparisons is that, I kind of issue a challenge to anyone who feels they cannot heal, to give it a try. My physical therapists helped, my doctors helped, my acupuncturist helped, but I guarantee you that I did it.