I Gave My Disease Six Months to Improve. It Didn't.


Today I woke up, walked downstairs, let my dogs out, and then uncontrollably coughed until I vomited.

Six months ago, my health worsened and I decided that it would be best to take some time off from school and work to focus on treating my disease and getting back to a place where I could be a productive student and employee. In just a few weeks, the Spring semester will be over. I will have spent six months at home, doing nothing except treating my faulty immune cells, and will be expected to make a triumphant return to my obligations.

The only problem with this plan is that I’m no better than I was six months ago. I still have dozens of medical appointments every month and a slew of specialists and prescriptions to keep up with. With infusions and my steadily decreasing lung function, I’m starting to wonder if going back is possible.

I am so, so tired. Tired of appointments, of coughing, of starting my own IV’s and the dozens of pills I have to take every day. I’m tired of sitting in a hospital bed, looking out the window and seeing the cars go by. From my room on the sixth floor you can see so many people, all on their way to work, or school, or to lunch with a friend. The world continues to turn but here I am, stagnant, left behind.

When my sister calls me, she asks how I’m doing and what I’ve been up to since we last talked. She is eager to talk about her life – all the concerts she’s been to, the drama at work, what she wore to a party with a friend. I always have to take a second and think before I answer her, “Well, what have I been up to?” The days all kind of blend together now, and it seems like before I know it another week has passed me by. I wake up, cough, throw up, take my medications, go to the doctor, come home, take more medication, and somewhere in there I also have breathing treatments, ER visits, hospitalizations, biopsies, etc. I realize that I’m not particularly doing anything (at least nothing outside of my medical appointments and treatments) so I tell her the truth and answer, “Nothing much.”

When I decided to take time off and focus on getting better (or as “better” as one can get with a chronic, incurable autoimmune disease), I really, really thought that things would pan out. I would remove as much stress as possible from my life, put everything I had into breathing better, follow my doctor’s recommendations exactly, and watch my numbers improve and my symptoms abate. Instead, nothing has really changed. I still have violent coughing fits, I still have kidney problems, and I still can’t seem to go more than a couple of weeks without ending up back at the hospital for one reason or another. My life has become a cycle of appointments and pills, needles and hospital food. This certainly isn’t where I imagined myself five years ago, and it is painful to see that the dreams and goals I had set out for myself back then haven’t been accomplished yet.

However, this doesn’t mean that I’m going to stop fighting.

Life with chronic disease is frustrating, heartbreaking, agonizing. Stuck in this room I feel isolated and so, so alone. I’m jealous of my friends and coworkers that are so easily able to go on a walk to the park or go dancing in the evening with their partners, while I can barely walk up the stairs without gasping for breath. In these dark moments, it’s easy to say that nothing has happened over the last six months, or even that I’m worse off now than I was before. It’s easy to say that all of the hard work I have put in has been for nothing – but that would be ignoring all of the incredible things that have happened!

I am more independent now than I ever was before, and am completely in control of my port-a-cath and its care. I have a diagnosis for my lung condition and a long-term treatment plan. I have an incredible team of specialists looking at my case, working tirelessly to improve my organ function and give me a meaningful quality of life. There is so much being researched right now, and new discoveries are coming out every single day. There is a light at the end of this tunnel, even if, for right now, it’s dim.

I am frustrated with how things are going, and I am tired of the boredom and monotony that comes with my current situation. I feel trapped and completely suffocated with pills and infusions and sterile dressing kits. But that doesn’t mean that I can let my frustration rule my life and give up on my body and my health. This isn’t fun. It’s not what I want to be doing. But it’s what I have to do, so I will continue to do it.

It will take me longer to finish my education and I will always have to take the maximum number of sick days at work, but that doesn’t mean that I will give up on my schooling or my career goals. With chronic disease you will always have to work harder than the average person to accomplish the same objective, but that doesn’t mean you can’t accomplish it. Never give up on yourself and don’t be discouraged if you have a few days (or weeks or months) where you can’t leave your bed. Even on the most frustrating days, even if you can’t do anything at all, don’t lose hope. Keep fighting, and I’ll keep fighting with you. We will get through this.

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