Author Evette Dionne, 34, knew something wasn’t right with her health back in 2016. It took several (harrowing) doctor visits and three years to get her answer: heart failure. For our second installment of Disability Diaries, she tells editorial director Reina Sultan about the experience—from first symptoms to diagnosis to maintenance.

In 2016, I had just moved to New York, and so I was walking a lot. I was experiencing lower back pain, shortness of breath, swelling in my ankles and in my abdomen, and general aches and pains that were different than any that I’d ever experienced before. At first, I just thought my body was adjusting from living in a more suburban environment to living in an environment where I was walking all the time. But by the fourth month, I was like, “Okay, my body should be better conditioned for the amount of exertion that I’m doing. Something is wrong.”

My very first step was to find a Black woman doctor. I was dead set on this and found someone who seemed like a good fit. And so I scheduled an appointment, met with the doctor, and explained my symptoms. She then also had me go through my weight history from 14 until then. She waited for me to finish and then she was like, “Oh, you’re just obese.” Those were literally her exact words. I was so angry. I remember calling my mom and just sobbing, bawling my eyes out and she was like, “Absolutely not, let’s find you a different doctor.”

I found another doctor and he was much kinder, but didn’t know what was going on. He just said, “I think you are vitamin D deficient.” I started taking vitamin D and it did nothing. So, I started to live with the pain and justified it by saying I was just getting older. This went on for about two years.

Around that time, I had a recurrence of fibroid tumors. I thought that could explain the fatigue and pains in my abdomen. My gynecologist put me on medications to control the growth of the fibroids in 2018. The meds didn’t work, so I eventually had to get another myomectomy in February 2019, when I was living in Denver. After I had that procedure, I thought I was going to feel better, and I did not.

A few months later, in May 2019, my father came to my office and said, “You do not look well. I think you might be having an asthma attack. You’re laboring to breathe. Please go to the doctor today.” I made an emergency appointment and went. I ended up seeing the nurse practitioner that day. And she was the first medical professional I encountered who took me seriously. I explained that I thought I was having an asthma attack and when the nebulizer treatment didn’t work, she said it could either be a pulmonary embolism or that something was wrong with my heart. She ruled out a pulmonary embolism and set me up for an emergency appointment to have my first echocardiogram, or ultrasound of the heart, two days later. I was in complete shock. When I think back on it, I don’t remember feeling anything. I wasn’t scared or sad.  I was in complete shock. I was just out of it, mentally and emotionally. It was like I heard it, but I didn’t hear it.

After the ultrasound, they called me and explained what was wrong, using jargon I couldn’t understand, but as I googled, I kept seeing, “Heart failure.” And I remember crying; I was hyperventilating at that point. I went to the cardiologist the next day. And the first thing she said was, “I’m going to tell you this: You have heart failure. Your heart is working at 16%.” She started me on medication for left ventricle cardiomyopathy immediately. They gave me a beta blocker and a diuretic to get the fluid off of my body. And that was it at first. Once they realized how my body responded to that, they added in a medication to make my heart beat slower and another to make it more regular, over the span of a month.

Over time, they build the medications up in your system, so they just kept increasing the doses. After about two months, the back pain was gone, the stomach pain was gone, and I wasn’t pooling the liquid in my ankles anymore. The only difference was I was incredibly fatigued because of the way the medication works. But other than that, I felt 10 times better than I had been feeling. Regaining heart function was slow. It went from 16% to 20%, and then 20% to 21%. I was in the 30s for a long time. But now, it functions at about 62% or 63%, which is ideal for a heart failure patient.

If you’re just getting a new diagnosis, I think the most important thing is to not push yourself too hard. My sibling also has heart failure. He was diagnosed a few years after me, also under 40. And one of the things I said to him early was, “There’s nothing you can do to make your body respond more quickly to medications, to regimens, to anything. You just have to go with the flow of it, do the things that make you happy.” Surround yourself with people who can advocate for you and alongside you, but really, take it easy on yourself. When you have conditions like mine, it’s a forever thing. It’s going to follow me to the grave. So I’m just following the path, paying attention to how my body feels every day, adjusting, asking for help when I need it, not pushing myself to do things that I know my body is not capable of, and not beating myself up for not being able to do them.

Outside of listening to my body, taking my meds, and doing some exercise, it really is all mental. Being in therapy, being in support groups with other people who have heart failure, seeing people who are doing well with heart failure… I think all of those things have helped me maintain and strive this long. I’m five years in now, and I feel great.