I thought I was invincible until I sat on a doctor’s table when I was 24 years old. I was there because I gained 50 pounds in a matter of months. Despite my strict diet and daily workouts, I continued gaining weight. I was frustrated and worried.
Many thoughts crossed my mind. “Diabetes runs in my family. Perhaps it’s that? If so, how am I going to afford my medications?” I was sweating. I over think everything. And the doctor always leaves you alone for what feels like an eternity in that cold, isolated patient room. I tried not to worry about the things that were not in my control. I tried.
The doctor eventually arrived. I told her what was happening. She ordered blood work.
“What if it’s something else?” I wondered to myself as I left the doctor’s office picking at the fresh band-aid on my arm.
A few days later, I received the phone call with the results from my blood work. That day, which also happened to be my 25th birthday, I was diagnosed with Polycystic Ovarian Syndrome (PCOS), severe anemia, and was told that both my vitamin D and thyroid levels were abnormal. I didn’t know what any of these words meant initially, but they didn’t sound good.
I politely listened to the nurse while she tried to schedule a follow-up appointment with the doctor, but I couldn’t wait for her to stop talking. I wanted her to stop acting like everything was okay. Blood rushed to my head. I felt hot and nauseous. The second she hung up, I broke down. I cried in my bed for hours until my significant other returned home. And then I cried some more.
I’m lucky in that I have been relatively healthy up until this point in my life, but it is undeniably earth shattering being told that you have an incurable disease, especially one you know nothing about.
It took days before I was ready to research my disease—to really figure out exactly what was going on with my body. My follow-up appointment to meet and speak with the doctor wasn’t for another week and a half, so it was on me to start looking for answers to my many questions.
When I was ready, I learned that PCOS is a disease that affects many women and also happens to be the leading cause of infertility in women. Symptoms include excessive weight gain, male pattern hair growth, male pattern balding, pelvic pain, irregular menstrual cycles, and more. In fact, there are different forms of PCOS. I happen to have the type referred to as “insulin resistance.” My body doesn’t process sugar properly and immediately turns it to fat—hence I put on weight quickly and it’s harder to lose. This is the most common form of the disease, but there is another form of PCOS that actually causes women to be underweight.
After meeting with my doctor, she assured me that, while it didn’t feel like it at the time, many factors about my disease were in my control. To help with the painful cysts that form on my ovaries, I was prescribed birth control. That’s right! I’m not only on birth control to prevent pregnancy; I take it to help my ovaries shut down so they don’t form painful cysts as often. I’m also on other medications that help my body process sugar properly, which has led to me losing weight. I changed my diet and started lifting weights. These are all factors that have helped me to feel more in control.
It took time, but I eventually shared about my diagnosis on Facebook, which resulted in many of my friends coming forward to show me that I wasn’t alone. This was incredibly helpful for me. While there are larger groups that help women with PCOS such as PCOS Diva, I find these groups less helpful because they seem more concerned with pushing products rather than creating an actual support group.
Because I wasn’t finding any groups to my liking, I decided to take things into my own hands and created a private group on Facebook called “Let’s Talk about PCOS.” It’s an informal group, where everyone can be honest and not worry about being judged, insulted, or bombarded with sales pitches. If you have PCOS and would like to be a part of our conversation, simply find my group and click the “ask to join” button. We have great conversations—some serious, some informational, and there’s even a sprinkle of comedy here and there. As of now, we have 15 members, who are all women I know personally, but I am open to any woman with PCOS joining our group. So feel free to reach out!
It’s been over two years since I was diagnosed with PCOS. With the help from my doctors and from other women with the disease, I have been able to better manage my weight and other pain symptoms. Now that I accepted that I’m going to be living with this disease, my next concern has been worrying about health care for the years to come.
Health insurance has always terrified me. Being from a lower middle-class family, money wasn’t readily available for a little girl who continuously fell out of trees. I made my parents so angry with my child recklessness because hospital bills devastated my family.
While attending college in Philadelphia, I remember waiting hours in the health center just to be seen for “free,” but the reality was that while these visits were included in tuition, the high-cost medications were not. I worked two weeks before I could afford the medication for my bronchitis and walking pneumonia. I could barely move my arm because my rib had cracked from coughing.
When I moved back to the Berks County area, I once refused a cast when I fractured my foot because I couldn’t afford it.
While working on my Master’s Degree, I had to switch my insurance to Medicaid. Between that switch, I needed to have my kidneys checked urgently. I’m still chipping away at that massive bill today.
My experience with health care up until this point in my life has been a stressful and disappointing one. I didn’t have trust in our healthcare system. And honestly, no one really taught me how to understand it. I constantly worried about being left to suffer or die. The safest I have ever felt was my recent years on Medicaid.
Medicaid was incredibly helpful for me when dealing with PCOS. I’m required to get blood work done frequently, and every six months I have to get an internal ultrasound. These are not cheap procedures, but they were completely covered when I was on Medicaid. My medications were also free under Medicaid. Medicaid made having an incurable disease a little less stressful. I don’t know how else I would have been able to afford my procedures or medications with my very small income.
As someone who depended on Medicaid for years, and would like the option to apply for it again if I’m not offered insurance or can’t afford insurance in the future, I do not like that Trump and his administration are making attacks on Medicaid and other health care services, such as Planned Parenthood, that are in place to help many people like me, especially women.
What we need to both realize and address is that Trump’s attack on Medicaid is a direct attack on women. In their article, “How the Senate health care bill will affect women,” Mary Alice Parks and Saisha Talwar speak about what cuts to Medicaid will do to American women:
One program the bill contains significant cuts to is Medicaid, which currently provides health insurance for 74 million Americans. Experts argue that the Medicaid cuts proposed in the bill could impact women in particular, because of the disproportionately large number of low-income women and women of color who depend on the program — particularly for maternity care.
I personally know many women who relied on these resources when they had their children. Given that I want to continue my education, there is a high probability that I would need help if I’m able to become pregnant. Medicaid has been helpful for me since being diagnosed with PCOS. I would like it to be a resource if I, and other women, need it in the future.
As many of us know and have been fighting against since Trump’s inauguration, our president does not value Planned Parenthood–another resource that helps a great number of women. Nina Liss-Schultz makes a case for what attacks on Planned Parenthood will do to women in, “There Is More Bad News for Women in the Republican Health Care Bill.”
The draft Senate bill reforming the Affordable Care Act that was unveiled last week is devastating for women’s health. It cuts all federal funding for Planned Parenthood for a year, makes it possible for states to opt out of contraceptive coverage and maternity care, and slashes access to insurance for low-income people. Add to this list abortion: Both the Senate and House bills would effectively make it impossible for a woman to have the procedure covered, even if she had private insurance.
Since his first day in office, women and men have come forward to show their appreciation for, and willingness to defend, Planned Parenthood. I myself have relied on Planned Parenthood for affordable birth control, health exams, and STD screenings since I was a young woman.
We must continue to fight and protect programs like Medicaid and Planned Parenthood from Trump and the Republicans who are misguided enough to still support him. As we know there are many people who are in danger if Trump has his way with our country’s healthcare system—a significant amount of these people will be women.
We need more women in political roles. We need more woman making educated decisions about the healthcare we ALL rely on. We need more women like Susan Collins and Lisa Murkowski. We need to pay attention. We need to continue to resist, and we need to fight for better healthcare. We need to remember the Women’s March from 6 months ago, and how we all came together to defend our rights. We need to protect the programs that protect us. And then continue to make them better.