Invisible Voices

New York resident Rachel Lobdell discusses her experiences with Stage 4 endometriosis, infertility, and other health issues.

Photo by Sophie Mathewson.

1.) Some background on you. Where are you from, and what is your profession?
I'm originally from St. Louis, Missouri. I now live in Brooklyn, New York, and I've been here for almost eight years. I work in media. I’m consulting as I try to figure out what my next full-time move is going to be. I have run digital strategy at some of the biggest newsrooms in the country such as the Wall Street Journal, USA Today, Fortune Magazine, and a bunch of local newspapers.

2.) Do you have a chronic illness or disability?
I was diagnosed with Stage 4 endometriosis almost 20 years ago. One of the hallmarks of endometriosis is it typically takes seven to 10 years to get diagnosed. I was diagnosed very quickly.

I went in for my very first gyno appointment. I was really just there to get some birth control. During the exam, I had a ton of pain. She immediately stopped and looked at me and said, ‘This is not normal. You should not be in this amount of pain.’ She asked me some questions, and it became very clear that what I thought was normal about the female body was not. We did some testing, and I ended up having an exploratory surgery. Then, she diagnosed me. 

I've had five endometriosis surgeries. I have them about every five years. Basically, they go in, and they excise all of the endometriosis adhesions. But there is no cure for endometriosis, and so it grows back. I eventually get more pain, where it becomes more debilitating. And then I have surgery again. 

Through this process, I am also infertile. I did six rounds of IVF to have our son. I had a bunch of pregnancy and birth complications, and during my last endometriosis surgery in May, I had my tubes removed, so I will not be getting pregnant again. And I'm high risk for ovarian cancer. They have found that ovarian cancer starts in the tubes. So if you're high risk, they recommend removing them.

I've had a series of other health conditions. I have kidney stone disease, where I get kidney stones really easily. I have migraines and a compromised immune system, where I get sick very easily.

3.) How has chronic illness affected your life?
It is a very big part of my life, and I think because I was diagnosed as a teenager, it is something I have just gotten very used to. I don't know what it is to be an adult without chronic illness. And I think it's been only recently that I have reflected how much of my time, energy, mental stability and money goes towards having a chronic illness that my friends do not have to deal with. 

I am an expert in navigating the healthcare system, insurance, billing. I spend hours on the phone coordinating things on hold, trying to get answers to something or trying to get two doctors to speak to each other. We definitely spend more than $10,000a year at minimum on healthcare. 

I've been starting to really think about, as we are looking at the next chapters of our lives, what it would have been like to have not had 20 years of spending that amount of money. 

4.) How has chronic illness and the obstacles surrounding healthcare affected your relationships? 
I have had doctors who have definitely been gaslighting me, and who have said ‘We think that this is a mental health issue’ or things along those lines. And my response has always been, I only want to be normal. I want to drink Bud Light. I want to eat Taco Bell. I want to be able to make the decisions that other people are making without thinking about how they're impacting myself. 

I have incredibly supportive friends and family who have been with me through thick and thin. I would say it's been more on me to make the right choices, and I've definitely gotten better as I've gotten older. I just went to a bachelorette party a couple of weeks ago, and I have to watch how much I drink. I have to get a decent amount of sleep, and I'm finally at the point where I'm making those decisions for my health, because I'm the one paying the price. In my 20s, I definitely pushed myself and would often have to pay the price for that. 

It's become even more important as I've become a parent because I don't have the space or flexibility to make up the sleep or take a week to recover from making a less healthy decision than I used to. I have to be on my A game every day, which means I really have to take care of my body.

5.) Was there a time that you ever had to forego treatment because it wasn’t covered under insurance? 
I've definitely had to forego some medications that were not covered. There have been times where I've had to take treatments less frequently than prescribed, because I've had treatments that were not covered. So, instead of doing them weekly, I would do them monthly, or things like that. 

But usually, I’m very upfront with my doctors. For instance, I had a prescription that they wanted me to do that was going to be $800 a month. And I was like ‘Look, I can't do this, so what is the next best option?’ And they were able to get me something that was cheaper.

6.) Has having a chronic illness made it harder to work full time? 
There have definitely been periods where it has been really hard. I have been lucky to have mostly very supportive bosses. Flexibility is something that is very important to me. 

My roles have always had a decent amount of flexibility built into them. I can go to the doctor without taking time off. And now, in my last role and moving forward, I have been very upfront in the hiring process that I have a chronic illness. This is something I manage through regular doctor's appointments, and it has not interfered with my ability to get my work done. 

But obviously, you know, I have to leave on a Thursday afternoon more regularly than other employers do, and I think I am at a point in my career where I've proven myself enough. But it is definitely something that I have been self conscious about.

7.) What are your hopes for the future of healthcare accessibility? 
There was a quote in, I want to say it was a presidential debate, not this cycle. I think it was the last cycle where someone said, ‘Anyone who says that they're happy with their healthcare insurance plan doesn't use it.’ I think about that all the time. One of the things that is most frustrating for me is the connection between the employer and healthcare. 

I am someone who is always going to max out my deductible. I am always going to hit the out-of-pocket max on our healthcare plan. But if I switch jobs, or I get laid off or something, and then I start a new plan, I am now meeting two deductibles, and so the connection between [the employer and the insurance plan] is really frustrating. It also means that I could never really go full-time freelance. I really need employer sponsored healthcare. Having care dictated by how good your insurance is, and that being variable based on where you work, is really hard. 

We just switched insurances. My husband got a new job, and his insurance is supposedly really good, which then means that as soon as we get our insurance cards in the mail, I will have to call all of my doctors and say, ‘Hi, I have new insurance. Do you take this?’ 

I think healthcare is mostly still really seen individually.  Most health conditions are at no fault of the person who has them. They were born into a body that doesn't work properly, and, in America, the cost for that in so many different ways is very, very high. If you don't have chronic illness, it's hard for you to even imagine what that looks like and how your life is so different. 

My hope would be that we move to a system that is less of a burden on an individual and think about it more as a collective. We talk a lot about student loan debt in regards to what [relief] could provide to society. It could set people up to buy a house or to have more kids or things like that. We should really look at medical expenses the same way.