#MyBodyMuse: Genevieve Hollingsworth (@gtothevieve)
This week we’re interviewing Genevieve — blogger, yoga-doer, dog-owner, virginia-dweller, human-being-in-a-body, and so much more — who’s sharing her experience of health with us. Genevieve reflects on her transition into being “sick” as an adult, and on how that new identity intersects with an already complicated relationship to her body.
MBD: Do you have a definition or a way to explain your experience of health?
I would define health as something you have but aren’t really appreciative of until you or someone you love has a huge shift with and becomes sick. When you are healthy, everything in your body is working as its supposed to. Nothing hurts, nothing is off balance. I define health as a body that is easy in how it feels and functions. I would also define health as something that many don’t really think about or consider in their day to day except when considering what insurance to sign up for or whether or not to get a flu shot. We know being healthy is important but when you only know what it’s like to be healthy you don’t really understand the gravity of what happens when you are no longer healthy. Until this happens you take health for granted (and don’t even realize you are doing so). Then something happens, perhaps a slow trajectory with no diagnosis or a fast decline with 3 different illnesses and then…and only then it becomes the very center of your existence.
MBD: How has that definition changed overtime and were there things happening in your life that contributed to that change?
This definition has DEFINITELY shifted since becoming sick at age 28. I knew I had been lucky with my health until that point-I had never had a surgery, never broken a bone, and really only got sick maybe once a year. My understanding of health was very broad and in all honesty I was very naive. I knew people who were sick, I had watched my mother-in-law die a very quick and brutal death from colon cancer, and had a few acquaintances who were chronically ill but I will be the first to admit that I REALLY didn’t understand the gravity of what it’s like to be sick.
When I developed CRPS and then 6 months later also become very sick with Lyme Disease and Bartonella, I then learned what its really like to be sick. I learned that being sick is multi-layered, that it affects things you never expect. Its very much like dominoes where one illness creates symptoms and then you take meds that are necessary but then they come with side effects and maybe some of your symptoms then affect what you can or cant eat which then affects if you can go to the bathroom regularly etc etc. It’s kind of like those “Choose Your Own Adventures” books except not nearly as cool.
I then became disabled at age 31 and learned even more about the complexities of health vs disability and where I fit in within that spectrum. There’s a lot of discussion about invisible disabilities vs visible disabilities as of late and I have realized I have had the “unique opportunity” of experiencing both. I know what it’s like to be really sick and in a lot of pain but look “Ok” on the outside. Back then I was able to work part-time, able to occasionally go out with my friends, and was never flagged as a “sick person” when out in public unless someone knew me personally. I now know what its like to be really sick and in a lot of pain but be unable to walk normally, unable to work, and spend most of my time in my bed. I know what it’s like to be in a wheelchair and have people IMMEDIATELY know there’s “something wrong” with me even though they don’t know me. Being disabled has shifted my life dramatically including how I categorize my health and goals surrounding my health. As long as certain illnesses aren’t controlled or in remission, I will be in too much pain to walk and will continue to have to use mobility devices.
MBD: We have these very binary ideas of healthy vs sick when we talk about health. Do you feel there’s an identifiable point where you transistion from healthy to sick, or vice versa? And if there isn’t a clear point, what kind of reference point do you use to check in with your health?
This is a great question! I have definitely had points where I transitioned VERY quickly from well to sick. When my CRPS first developed it was a slow transition. I was in a good bit of pain but I still was able to work and somehow (I have no idea) I was still able to go to the gym even though I wasn’t able to do high impact stuff because it made my nerve pain worse. Then when I became sick with Lyme, it was completely different. I was bedridden within days, every part of me hurt. I truly felt like I was dying and people around me worried about this as well.
Several years later when my CRPS became super severe due to a procedure going wrong, I had the same experience. Within one day I was unable to walk and then I spent many weeks in a pain so intense I screamed when the shower water hit my feet and could not tolerate any kind of shoes. I would absolutely agree that our views around health and sick are indeed binary but man sometimes, it is truly back and white in how quickly you can go from “doing okish” to “oh god theres something REALLY wrong and I’m in excruciating pain”. I have also found that there’s often times where I have found myself existing in the “grey”, I can tell something with my body and health is “shifting” but I can’t quite put my finger on it.
As I said above for me some of my health centers around my mobility and the use of a wheelchair and walker. They have definitely become my “markers” since in order to NOT use mobility devices my pain has to be under control and/or lessened and I also have to be strong enough to actually walk and bear weight for more than a few minutes.
I also use my pain and my chronic nausea as markers since these are the two most significant parts of my illnesses.
I ask myself these kind of questions before a drappointment because I know my treatment team wants “quantifications” of how I am doing — what’s worse, what’s better etc.
“Can I tolerate wearing shoes or clothing?”
“How many days this month have I been able to leave my house?”
“Am I able to tolerate any kinds of food without getting nauseous?”
MBD: How does your relationship with your body change as your health changes?
My relationship with my body has been complicated long before I got sick. I have struggled with Anorexia Nervosa on and off for over 20 years. It’s been hard to then have the body that I hate “turn on me”. When the Lyme first began, I found myself having an existential crisis (totally tongue in cheek) because I couldn’t make my body stop doing all these crazy terribly painful things. I was SO used to “telling my body what to do” that the idea of not having control in a terrifying situation was a real mindf***. Having such a mercurial relationship with my body for so long and then adding in two chronic illnesses has been a challenge but also given me an opportunity to look at what it means to “own a body”.
Becoming disabled was really really devastating and I have oscillated through a LOT of body hatred beyond my usual eating disorder themed hatred. I know it isn’t my body’s fault but when my body is producing so much pain that I have to take morphine just to shave my leg…its hard to not just feel FURIOUS with my body. I often wrestle with feeling like my body has let me down and really struggle to figure out how to be body positive when my body brings me so much misery and dissapointment. It’s definitely an on going process of accepting that this is where my body is at while still acknowledging that this is a hard situation and it’s ok to be mad at my body as long as I remember my body isn’t “doing this on purpose”. One day when I was really stuck in a fiery rage filled moment of self hatred, I realized my body is truly doing the best it can given the circumstances and it was amazing how that flipped the script in my head. My body is fighting all of this as hard as it can and in realizing that, I knew I had to be much more gentle in how I thought and even spoke to my body. My body isnt punishing me, it’s fighting WITH me.
Do you have something to say about your experience of health and body image? We’d love to be in touch. Send an email to firstname.lastname@example.org.