When a Doctor Said 'Hope Won't Help' My Chronic Illness

The day that I was diagnosed with pulmonary hypertension, a doctor waltzed into the room and announced that I had five, maybe 10 years left to live. He had spoken to my parents first about the news. I looked over at my parents to gauge their reaction. Was this really happening? My mama said very strongly, “It will be OK, because we have hope, and we will get through this.” The doctor seemed almost angry by what my mama said. He nearly cut her off to say, “This isn’t cancer. Hope won’t help you.” That was pretty much the end of the conversation. Well… actually, it wasn’t.

I was going to leave this part out, but it didn’t feel authentic. After what the doctor said I threatened to end my life. If hope couldn’t help me… if there was no hope for me, how could I possibly face each day? I was instructed to go have more blood work and go home after my parents convinced the doctor I would be safer at home with them than at their ward. It was a few days before Christmas. None of this felt like the movies.

On the car ride home I tried to process what was happening. Nothing made sense. The disease and the symptoms came on so uncharacteristically quickly for the disease. I knew something was wrong. I went to the emergency room multiple times, but my symptoms were often overlooked because of my age and appearance. If it was caught sooner, I more than likely would have had a better chance at all of this. Instead, I was diagnosed between a stage three and four. I was put on supplementary oxygen that I needed 24/7. I was 25 years old.

As soon as I got home, my wonderful boyfriend Spencer raced over to my house with a bag full of my favorite teas. I had to tell him the devastating news. We of course cried and hugged. I asked him how could I be “dying” if I felt so good? This was something I said a few times to him and my family, which was often recieved with concerned looks. I didn’t know how sick I was. Maybe I was in denial, or maybe I hadn’t completely given up all hope yet, either. I am sure it was a combination of both.

Spring came and it was such a wonderful reminder of what can happen. Plants play dead for an entire winter only to remind us of rebirth in the spring. I told myself that I would get off the oxygen by the time the snow melted. It didn’t happen. There were so many times I felt so pushed down that I couldn’t imagine getting back up. But I did. Life was different, but I made changes to adapt to my new abilities — or lack thereof. I cut my hair short and got a stool for the shower. I bought sweat pants and asked for help when I needed to change clothes. I went to places where there were motorized scooters I could use. I still had hope I would get better. Even when I told myself I had given up, a tiny flame of hope still stayed ignited inside of me.

I slowly started to improve, but not in the way I was told I would. When I was able to walk a little easier (with oxygen, of course), I started to do light actives in hopes of regaining strength. I realize now that if I truly did not have hope, I would have never left my bed to try and work out. I had to turn my oxygen flow up even higher to do Wii Fit yoga. I tried not to feel discouraged, and instead focused on my success. I was able to go from doing yoga for five minutes, to 10 minutes and eventually an hour. I improved on my poses, and was able to do more advanced movements. Eventually I was able to do strength training. Then I was able to turn my oxygen flow lower and lower until I was eventually able to do yoga without feeling short of breath or like my heart was racing. If I lost all hope, I never would have tried or been able to see what I could do.

Today, I mostly use my oxygen for sleeping and heavy exertion. I am no longer in heart failure. My life is still very different, and my future feels like a giant question mark. I had to retire from work because stress made my conditions worse, but was so worth it because I feel as if I improved a little more. I’ve seen countless doctors and specialists to get other opinions. Each one has treated me like a pig at the fair and tried to guess how long I will live for. I have heard five years but I have also heard more than 20 years. Some younger doctors have also told me not to worry about the disease. I believe there is power in living in the present, but I don’t want to lie and say that it is easy living with so much uncertainty.

Two years have passed, but I still try to remain hopeful. I still feel that tiny flame inside of me that motivates me everyday. The tiny flame motivates me to be as healthy as I can despite everything. I eat healthy and still excise every day. I usually walk at least a mile each day. I also like to do yoga, pilates and strength training. I also meditate at least twice a day and try to write articles and draw because being creative makes me feel like I am still accomplishing things, despite no longer being able to work.

A few months ago I stayed overnight in Niagara Falls with my boyfriend. I laid awake the entire night with my oxygen on, hoping to finally fall asleep. We slept with the curtains open and I could see both of the falls, the casino and the cityscape. I cried because there was a point that I thought I may never see Niagara Falls ever again. I also couldn’t believe I had someone asleep beside me who has supported me through all of this. I cried because our trip was different than it would have been if I didn’t have pulmonary hypertension. My life isn’t how I imagined it would be, but I still try to remain hopeful and open. I am going away on another trip this weekend, and hope to do more small trips this summer (I think only one overnight stay is all I could do for now because of the oxygen).

To anyone who is newly diagnosed with something and told not to be hopeful — please don’t give up. Take the time you need to pick yourself up, and find that small flame inside of you. Hope can be a powerful tool. Although hope may not make things perfect, it can help motivate you in ways you never imagined. There were many times I felt like giving up. In fact, I still have days where I feel like my situation is hopeless.

However, hope has powered me to continue to keep trying. Although my future remains a question mark, it is also unwritten. Yes, things are very different but hope tells me to keep trying. I have learned to embrace every opportunity that I can. Celebrate every milestone. Hope has taught to me to laugh as hard as I can. Hope has made me love as deeply as I can. Hope has showed me how to enjoy small moments like the first snowfall of the year. These are the things that can not be extinguished. At first I thought I would never laugh again — but hope teaches you how to laugh harder.

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

The Crisis Text Line is looking for volunteers! If you’re interesting in becoming a Crisis Counselor, you can learn more information here.

Follow this journey on The PHight or Flight Project.

The Mighty is asking the following: Describe a moment when you were at a hospital and a medical staffer, fellow patient or a stranger made a negative or surprising comment that caught you off guard. How did you respond to it? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.