​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. 

Starting stories – tell us about your diagnosis, what were you thinking, feeling or when did you first know something was wrong?

I’ve very deliberately not looked back at my earliest blogs before writing this, I kind of wanted to tell my story from my viewpoint now, not be influenced by my thoughts of early 2015. This of course means memory errors are likely when it comes to dates etc, but I’ll not let that stop me 😉

In September 2014 I clearly remember a conversation with a friend who had noticed I wasn’t my usual self. I couldn’t put my finger on it, I just felt kind of run down, not quite right,and I’d started getting night sweats. Towards the beginning of December I still felt the same and booked an appointment with my GP.
The day before I saw her I said to a colleague I must have banged my left hand, it felt sore. I woke up the next morning in agony. Both my hands were swollen and I could hardly move them, and my left shoulder had seized up overnight so badly I couldn’t move my left arm! This of course was very timely as my GP got to see my first flare.

She immediately suspected RA, and arranged a referral to a rheumatologist. That first appointment happened around the end of January, and in the meantime being me I’d hit Dr Google hard and was convinced it was RA myself, or possibly lupus, neither of which looked good.

Prior to this I knew nothing about RA, and if asked I would have said it was sore joints! As I gradually found out this was far from the real picture. The first time I saw my rheumy she ordered a number of bloods and xrays of my hands and feet. I think it was February when I returned and got the official diagnosis, and by this point things had got steadily worse.

I was getting pain and swelling in a number of joints, and starting to suffer from severe fatigue and brain fog. My job as Head of Leadership for a training company involved staff and contract management, and a lot of travelling. I was repeatedly losing the thread of conversations mid sentence, which was particularly embarrassing during staff reviews when clear communication is obviously very important.

I started methotrexate around this time, having been ‘promised’ that in a couple of months I’d feel back to normal. I’m still cross to this day about the rheumy making a claim that she should never have uttered as there simply are no guarantees with RA meds. If you’re interested mtx is still considered the gold standard for RA treatment and works brilliantly for around 50% of people, so don’t let me put you off!

This led to me feeling over the next couple of months that I was slowly going mad. I wasn’t feeling better, my pain and fatigue levels were increasing to the point that by mid March I was crying on the way to work and then home again because of the pain, and almost falling asleep in meetings. I became increasingly worried that driving the long distances I had to was dangerous, my concentration was shot and I was having to pull over frequently for fresh air and coffee to keep me awake.

My GP convinced me to sign off work for a couple of weeks, and I had my third appointment with the rheumy who had in the meantime given me steroids to ‘help’ the methotrexate. At this appointment I explained how much worse things were to the extent I couldn’t work, and her response was if the steroids weren’t making me feel better then there was no RA pain and I was imagining it. I left her office in floods of tears and refused to see her again. I felt like I was going insane.

It took my own research to discover that around 30% of RA patients are steroid resistant which meant they would have no effect – I’ve also has steroid injections fail me so my GP agrees they just don’t work for me at all.

I remember the worry and confusion I went through during this period quite well, and I sincerely hope others find a rheumatologist with a much more sympathetic approach – if not, change. This is such an important relationship and more than anything else at this time I needed to feel validated, I was not imagining my symptoms and I really needed open, honest discussion and support from my consultant. She let me down badly. You can read about this here

I fortunately found a couple of fabulous RA support groups on Facebook during this period, and was soooo relieved to know I wasn’t alone, and to find somewhere safe and private to ask questions, vent or just share symptoms. It’s not exaggerating to say these groups saved me, they gave me the validation I needed, along with years of shared experience and advice, for which I’m eternally grateful.