Active versus reactive patients – We usually start as naïve and trusting patients, then at some point we realize we must take an active part in our own medical decisions. Tell the story of your move to active patient or why you are not there as yet.
I was wondering last night where to start with this one, and I’ve just seen a lovely example of the difference on a forum in a thread about recording and understanding our regular blood test results. In fact I’m wanting to add in a third definition, passive patients.
So, what do we actually mean by Proactive, Reactive or Passive? Bear in mind these definitions are mine, others may have perceptions that are different but just as valid. So in my head alone…..
- Proactive patients research, discuss, prepare for medical appointments with lists, diaries and questions and engage with their rheumatologist in a two way discussion. They understand what their blood counts mean. They feel a responsibility to manage their health care and this makes them feel empowered. They say “I record my test results every time, I like to keep a close eye on things”
- Reactive Patients wait to be told by their rheumatologist what to do, they attend their appointments and will often feel anxious or angry afterwards because they weren’t able to express themselves fully or ask the questions they wanted to. They believe their rheumy is responsible for their healthcare. They say “my rhuemy just says ‘bloods are fine’she never discusses them”
- Passive patients aren’t really interested in their disease beyond basic daily survival tools. They don’t want to know the details, don’t see their disease as important and they’re happy to just collect their meds and take them. They feel apathy towards their RA, which is why they’d say “Can’t be bothered with my results, not filled my bloods in the book for 8 years”
I think from the start of my symptoms I moved to proactive fairly quickly, it’s just my natural coping mechanism. I know I was initially passive in the strange and scary medical environment I unexpectedly found myself in, and probably unusually for me I temporarily felt I’d lost my voice (metaphorically), I just didn’t feel able to speak up without a good level of knowledge behind me. I was also having bad anxiety attacks. But I made sure I learnt! I had certainly become fully proactive by the time I ‘fired’ my first rheumy.
Has being a proactive patient helped me? Yes, absolutely. I insisted on a new rheumy and now have a good relationship with her. I insisted on a Fibromyalgia examination and got the diagnosis I had suspected. I meet regularly with my GP who can keep an overall eye on my various medical conditions. I obtain print outs of my blood test results and I know how to read them and which ones indicate disease activity. I have researched, joined forums, asked questions, attended an NRAS conference and now blog regularly.
All of this has helped me slowly find a form of acceptance of my disease and my disability. Has it made it easier? Hard to say, for me knowledge is power, others are perfectly happy to be guided along and not concern themselves with the details. I think the most important approach is to take the road that makes you feel happy.
2 thoughts on “#rablogweek 2 – Active vs Reactive Patients ”
Oh wow! Well that’s me suddenly moving from reactive to proactive from the start of your article to the end! Thank you!! I now realize I don’t have to be scared of this disease and sit like a mouse in my Rheumy appointments, and I should be given access to all my results. I almost feel ashamed to admit to being so naive before. I’m not a new patient to this auto immune disease life, I’ve had a blood disorder for over twenty years and could probably teach medical students on what I’ve had to learn about white blood cells and bone marrow over those years, but RA blindsided me right after we had emigrated to America and I have to confess a combination of that and having no understanding of how the insurance system or health system works here has tamed me into this quiet creature who accepts and doesn’t ask. Last week I prescribed Humira for the first time at my Rheumy appointment, I totally understand that I have very very limited options in what is safe for me, and just accepted his opinion. Three days later the trouble really started though when I must have had six hours of phone calls in one day all about this prescription, and it really hit home I had no understanding of what was going on. Thankfully being in an incredible online support group I have learnt what things to research at home but ask for blood test results?? Ha, who knew that little gem would be the wake up call I needed. I will be purchasing a file and diary In the morning….or afternoon depending on stiffness…..and getting Myself back in the loop. Thank YOU!!
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Kerry I’m so pleased my post has helped you, it blindsided me too at the start, but after leaving my third appointment in tears enough was enough. I’m six weeks into Humira, let’s hope it works for both of us 💙