My experience as a nurse with a chronic autoimmune condition

As a nurse with a chronic autoimmune condition, I have a different insight into the concerns that some patients have when they come to hospital. After working as a paramedic and a nurse I thought I had a fairly good understanding of what patients with chronic diseases went through on a daily basis and could empathise.

Oh, how wrong I was. I now understand how much of an impact a chronic disease has on your life. It does not affect one aspect; it affects them all.

I was diagnosed with rheumatoid arthritis (RA) towards the end of my graduate (grad) year at age 37. This was both a blessing and a curse. Finally, I had a diagnosis and a cause for my symptoms. For years multiple doctors had attributed my symptoms to shift work, anaemia, being overweight, anxiety, depression, being female, menstruation, fertility treatments, incorrect shoes and too much texting.  At one point I thought I was developing early-onset dementia. I thought the joint pain was due to poor posture and gait and awkward sleeping positions. I could not understand why I had intermittent joint pain, constant fatigue, and a feeling like I was always forgetting something.

Over a period of five years, while symptomatic, I underwent multiple rounds of IVF and so had multiple blood tests and two surgeries. It took moving to a new town and finding a great GP who looked at my history and listened to me and asked me if I knew that my CRP had been elevated for over five years. Not one doctor had told me this. My new GP immediately ordered new tests and my RA was diagnosed. My first thoughts were quite comedic; could I still wear high heels, and will my rings still fit on my fingers?

The long-term health concerns were the least of my worries. Once reality sunk in and I began to do some reading I realised that this was not going to be easy. I could continue life as normal or I could be in a wheelchair by age 40. There was no way to tell how I would progress and what this new diagnosis would mean for my newly begun nursing career, let alone my life in general.

I am one of the lucky ones though as I live my life with minimal changes. But how do I cope working as a nurse while having an autoimmune disease?

Eat healthily. Nope, I don’t do that. I normally work in the ED, so I live on coke, cheese and biscuits, and cakes from the staff room.

Exercise. I Don’t do that either, although I do walk multiple kilometres each day between the patient’s rooms and the pan room.

Practice good mental health. I don’t practice mindfulness, meditate, do yoga or journal.

Many nurses reading this understand that we are the worst patients and it is very much ‘do as I say not do as I do’. I would encourage my patients to eat a good healthy diet, exercise regularly, reduce their caffeine and alcohol intake, reduce their stress, and see their GP regularly, none of which I do.

What do I do to look after my health and manage my autoimmune disease in the workplace?

I understand my limitations and work around them. I now work part-time in a private hospital emergency department that is not open overnight, so I do no night shifts or late earlies. I stagger my shifts so that I have days off in a row to rest. I see a psychologist and take antidepressants. I have regular skyped appointments with my rheumatologist. I consider my pharmacist my new best friend given the number of medications I take to keep the RA under control.

However, the biggest change I have made is admitting that I can no longer do everything I once could and I now ask for help. If my hands are sore and I am having trouble cannulating, then I swap tasks with a colleague (patient safety first!). I ask for help if I can’t open the childproof lids. I adapt my patient’s surroundings to suit me.

I know what works for me won’t work for someone else but we see this every day in the clinical aspect of our work. One patient is quite content with a heat pack and two Panadol whereas another patient requires large amounts of fentanyl and endone. No two people are alike and nurses who are patients need to remember that. You cannot compare apples and oranges.

I am also taking on new opportunities that will lead me away from the floor and clinical aspect of nursing. I have discovered a liking and affinity for teaching and taken on casual teaching at the local university. I am currently seconded to the education department within the hospital I work and am acting as a clinical facilitator. I have learnt that nursing isn’t always about being by the bedside and that nursing takes on many forms, and I am not any less of a nurse if I am not actively treating patients. Without our nursing lecturers there would be no nurses. Without our nurses that work in policy and development then we would not be the professionals that we are or be able to do what we do. There are many opportunities for nurses with conditions or disabilities but finding them is the hard

I did not think that five years post-graduation I would be looking for ways to move out of the clinical realm of nursing, but then again I did not think that I would have knuckles the size of plums, wear special innersoles for my bursitis, have the grip strength of reused micropore, and the fatigue levels of someone having pulled a week of nights after working one shift.

If I have learned anything from developing an autoimmune chronic condition it is that this is the time to put your needs before the needs of your patient, colleagues and employer. Working yourself too hard does not benefit anyone and the only person to ultimately suffer is you.