What This Nurse With Chronic Illness Learned From Her Patients

I was diagnosed with postural orthostatic tachycardia syndrome (POTS) about halfway through my final year of nursing school. In the middle of my exams I was hospitalized, which was an incredibly grounding experience given that I had just spent a large chunk of time on the other side of the hospital bed learning how to look after people. I was shocked at how vulnerable I felt, even though intellectually I understood exactly what was going on around me.

The years that followed involved me graduating, getting my first job and going on to become more specialized in oncology, all the while also trying to balance and manage my own chronic illness; I was also diagnosed with fibromyalgia during this time. Being a patient and taking on the “sick role” whilst simultaneously being a caregiver is incredibly hard and can be frustrating. But during my journey I have met some absolutely incredible patients who are navigating much harder and more complex health conditions than I am, and without realizing it they have taught me an awful lot about how to make the best of being a patient myself.

Here are some of the lessons my patients have taught me and that I do my best to implement:

Enjoy the good moments, too (whenever possible).

I commonly see patients who make the best out of their situation and take joy wherever they can maintain a much better level of health than those who hold onto negativity—whether it be anger, frustration or sadness. This doesn’t necessarily mean ignoring negative feelings, but rather, seek help in dealing with them rather than letting them rule you. Smile and laugh as much as possible! Enjoy those moments of happiness and fun, no matter how fleeting they are.

Never be afraid of expressing your emotions and asking for help.

Health professionals want to help, but they are not mind-readers. The patients who end up with the greatest support system are those who acknowledge how they’re feeling, share their thoughts and ask for what they need. There are so many different services available out there that can help you.

Write things down, especially questions.

The majority of chronic illnesses bring with them some degree of fatigue and cognitive impairment. Plus, it seems to be a pretty universal experience to forget everything you wanted to ask as soon as you sit down in front of a doctor! I have met some incredibly organized patients who make lists, keep journals, spreadsheet symptoms and write down questions—this takes all of the effort out of having to remember things on the spot and under pressure.

Stay as physically conditioned as possible (within your own limits).

Exercise has been shown to reduce fatigue, keep people mobile and prevent muscle loss as well as improving mental health. Patients who are proactively involved in maintaining their physical condition tend to do so much better than those who don’t. During a hospital admission, it is very easy to quickly decondition and if your baseline level of fitness is already low then recovery ends up taking much longer. I am currently working with an exercise physiologist to increase my strength and level of functioning—I highly recommend it.

Utilize your support network.

Ask your friends and family for help! Life as a patient is already hard enough—if people are willing to help, then please let them. Your focus should be on recovery and feeling well. Don’t ever be ashamed to admit defeat and ask people to assist because you will benefit in the long run. I’ve found it’s a lot easier to ask for a specific task to be done, for example “I need a lift to the hospital” rather than just accepting vague offers of help, because people who aren’t living in your situation aren’t always sure what help actually entails.

Make friends with other patients.

I have seen some firm friendships develop both in the ward and the outpatient environment. The great thing about other patients is that they understand exactly what you are going through. You don’t have to be a hospital patient to be able to do this; utilize the internet and social media to find support groups.

Find and maintain a hobby that is not health focused.

This can be a bit different for everybody because you have to be able work within your own functional capacity. I’ve met patients who have started making jewelry at home (and brought them in as thank you presents to staff!), patients who bring Lego in for their hospitalizations as well as patients who are avid readers. I myself have taken up digital artwork as well as reading and writing. It doesn’t matter what it is, as long as it takes your mind away from focusing on feeling unwell. If it’s a hobby that can give you a sense of accomplishment when you’ve finished something, that’s even better!