Monday, 26 September 2016

#RABlog Week 2016: Post No.2

Daily Prompt:  

Active vs Reactive patients: We usually start as naive and trusting patients, then at some point we realise we must take an active part in our own medical decisions. Tell the story of your own move to active patient, or why you are not there as yet.

Generalisation alert!!

My mother was a great one for dividing people into two groups when she was getting herself into ‘delivering a message’ mode. It used to drive me nuts, because it was always so black and white, and people generally operate in shades of grey. So, she’d have a good laugh on me for what I’m about to write.

In the RA and broader chronic illness community, most of the time, I tend to see two groups of people. The first group are those who ‘live’ their disease. The second group are those who get on and live their lives, in whatever way makes sense, with the disease. As I see it, that’s largely a mindset situation.

From what I see, the people in the first group become focused on the disease first and foremost. Everything they do revolves around that, and in a way, they ‘become’ their disease. Those are the ones I see as reactive patients. The disease dictates how they operate, they wait on what’s happening with that before they make decisions about what they do on a day to day basis, and they defer to their doctors and wait on decisions from them about diagnoses and treatments. They tend to be more passive about those decisions, and ultimately, have less broad knowledge about the disease itself.

Active patients operate quite differently. Sure, the disease is a large part of their lives, but the crucial difference is that it is a part of their lives, not the sum total. Making that work involves being a lot more active in the decision making process about treatments, and acquiring more knowledge about the disease so that there can be real partnership with treating specialists, rather than an old style doctor-patient relationship where the patient is a passive receiver of treatment.

I’m a naturally curious type, and my instinctive desire to dig into subject matter to understand it from the inside has taken me into the world of academia – as a historian, artist, and musician. I’m driven to go back to the origins of whatever topic I’m working on, and understand it from the bottom up. When I got sick, that same need to know meant that I got stuck into researching the disease, the history of different treatments, and other people’s experience with RA. In the process, I also discovered that there are altogether too many medical professionals who are extremely precious about their own knowledge, who are threatened by knowledgeable patients. While I’m not going go into that in this post, my gut feeling about it is that that’s about ego more than anything else. After all, who the hell am I, a mere patient whose academic discipline is firmly bedded in the Arts, to front up to a doctor who’s spent years training in their field and then both question and challenge what they may offer me?

Running foul of these types of practitioners has made my doctor shopping quite specific. I require doctors, from my general practitioner to my rheumatologist and all the ancillary medicos in between, to be prepared to work WITH me on my treatments, and to give me the benefit of their knowledge of the disease process while taking on my knowledge of the disease as I experience it. Fortunately, I’ve managed to find doctors that meet my requirements over the years, although that’s also meant I’ve had some less than happy experiences with doctors who don’t want to have to deal with someone like me.

Back in the day - pre combination drug therapy - when I was still in the early stages of the disease, at a time before the current trend of treating with multiple DMARDs concurrently, I’d been prescribed Plaquenil and had an adverse reaction to it. I’d then been prescribed Sulfasalazine by itself, and while I didn’t react adversely, it didn’t do anything much for me. My then rheumatologist wanted to move to the next level which, at that time, meant gold injections or Methotrexate. As someone who’s always been leery of taking meds, particularly long term meds that felt, to me, like a massive jump. I grilled my rheumatologist at that point. I’d already had to wean my baby early to start the two DMARDs and move up a level with the NSAIDs, as they were contraindicated while breastfeeding. I’d had to deal with the side effects of Plaquenil, and they were pretty nasty. My blood work was still borderline, the disease activity was relatively mild and slow moving, and he wanted to prescribe drugs with much higher toxicity and likelihood of nasty side effects. Ultimately, he agreed that it was medically difficult to justify that step at that time, and left me with the stronger NSAID and prescription painkillers to deal with the bad days.

While I know the rheumatologist found that frustrating, I didn’t see myself as being a non-compliant patient. What I saw was myself taking an active part in the decision making about what course to take at that point, based on what I was experiencing with the disease at that time. At the same time, a woman who was to become a close friend had been diagnosed with Lupus and Sjogrens Syndrome. Her rheumatologist was a pretty dominant type, while she doesn’t have my tendency to fight when I feel like someone’s taking over, so I watched her get progressively more overwhelmed by the whole process and land on a bunch of drugs with which she struggled, but accepted because ‘the doctor said so’ without any questions about alternatives.

Eventually, it was my choice to move my care to my general practitioner. As long as I was on basic drugs – the NSAID and pain meds – I didn’t see the point in spending the money on specialist fees. My then GP agreed, as subsequent ones did, on the proviso that if anything changed drastically, I’d go back to specialist care. That was fair enough, and that’s how it stayed for some time.

I do remember a fairly priceless conversation I had with that first GP though, that even now makes me chuckle when I think about it. I was getting a lot of muscle spasms that were causing a build up of knots that were particularly painful. Regular physiotherapy helped, to a point, but that was more of a bandaid than an actual fix. Ultimately, it was happening because I was overcompensating for joints that didn’t work properly by using muscles to do things that they weren’t really designed to do, so a highly dysfunctional dialogue had developed between the joints and the muscles that was difficult to manage. I was also experiencing a significant rise in my pain levels.

After some discussion with various people, and some research in the library (it was pre Internet and Dr Google), I went to her and offered up the theory that as Valium was, chemically speaking, a drug that functioned in the body as a muscle relaxant, a low dose of Valium might break the cycle that was happening between my muscles and joints, thereby dropping pain levels and allowing me to also drop the level of analgesia I required. I then sat back to let her chew on it. She thought about it hard enough for me to almost be able to see the cogs whirring in her head, then gave me a long considering look. Then she told me that the theory was sound, but that Valium wasn’t generally prescribed as a long-term medication, due to its addictive properties. However, by then she was well acquainted with my lack of desire to take ANY meds, so asking for one meant there was a serious issue, and she knew that I don’t have addictive tendencies, so she prescribed one bottle of 5mg Valium, with instructions to take it around three nights a week, at most, and see how it went as an experiment… It worked as I’d hoped it might, and it’s been on my meds list ever since. It can take me months to work through a single prescription, as I can go for quite a while before those spasms build to unacceptable levels that need dealing with, so as new doctors have come to know me, they’ve been fine about continuing to prescribe it.

When the disease suddenly switched into overdrive a few years back, my GP – a different one by that stage – who’d been operating on the same basis as the previous one dug her heels in once I went in for a stronger NSAID and a whole new level of analgesia and said she’d give me those, BUT it was time to see a rheumatologist. The one I found was wonderful.

His philosophy is that unless his patients are fully involved in the treatment and active in the relationship, he can’t treat us properly. He has encouraged me to read and learn – particularly since treatment styles have changed significantly between when I was originally diagnosed and when the wheels fell off. Every time he’s put forward a new drug, he’s supplied me with literature to read so I’d understand how it worked. At every appointment, he’s asked me what I’ve been reading, and often I’ve brought him information about new research that he’s not caught up with, or variations on a treatment of which he was unaware at that time.

One of those things, which resulted in a change in the delivery of my current biologic drug, was my discovery that taking it via subcutaneous injection gives a fixed dose with no variation. However, if it’s delivered via intravenous infusion, the dose is calculated by patient weight. That meant if I switched to the infusions, I’d be able to get a dose that was 750mg delivered in a single dose every four weeks, compared to 500mg from the sum four weekly injections. Because it was a drug that he used less frequently, and because he was also not generally in favour of infusions, on the grounds that they are restrictive on patients, that was something he didn’t know. When I pointed out that I’d not had severe side effects from that drug, and that it had worked quite well, but I’d plateaued at a point where he was starting to consider changing the drug altogether, I asked him if I could try the infusion to get the higher dose to see if that would make the difference, before the uncertainties of switching to a whole new drug. As I’d hoped, the larger dose did make a difference – enough to make staying on that drug viable.

Having just done a big interstate move, I’ve yet to meet the rheumatologist I’ve been referred to by my previous doctor. However, my previous rheumatologist got to know me well, and knows I need a doctor who will work with me, and respect the knowledge I have. So far, in a phone conversation with the new doctor, and many consultations with his staff as we’ve organized the transfer of my records, pathology services and the infusions, I’ve found them to be helpful and cooperative, as well as easy to access and prompt in returning calls. It bodes well for the future.

Clearly, I see myself as an active patient – as much as I ever stop to analyse myself as a patient…! Educating myself enables me to take an active part in the management of my disease. It does require that I have doctors that support my role in the process, but at the end of the day, I do believe it means that, overall, my disease is managed better than if I just sit back and allow the doctors full control, and let the disease be something that rules my life.


  1. I agree with you 100%. I don't consider myself a noncompliant patient, as I want to know what I am up against and not just do something, because my doctor wants me to. I have always been analytical and that has not changed, with this journey. Great read and I can see, you have done your research.

    1. My take on it is that this is something very big that's happening to ME, in MY body...and it makes no sense to not learn as much as I can and be as informed as possible. The real trick is finding doctors who will work collaboratively. So far, so good, and in November I'll see the new rheumatologist, and hopefully he'll be as my Sydney doc assured me.

  2. I personally love getting infusions. I think I like taking the time to sit and listen to music or maybe I moslty like the special attention. I am a bit of an attention hog or so I am told sometimes.

    1. Ha! Rick you are funny :-) You do have a point though. I liked the environment in the hospital much better, and having a crew of people that I'll see every month and be able to get to know. But also, the reassurance of knowing that should anything go wrong, there's back up there. It's a private hospital, so there was a full admissions process and an actual BED to get comfortable in, and the woman in the other bed was an artist too, so we talked shop most of the time, which was fun!

  3. My new rheumatologist is the same way. He is probably only 5-10 years older than me and recognizes that my 34 years living with this disease may actually count for something. He knows that I am an active, educated patient, involved in the greater arthritis community and he treats me with the respect of a peer. We spend half of my appointment talking "shop," the state of rheumatology, new discoveries, new advocacy efforts. It feels so amazing to be treated with respect and with the acknowledgement that I may not get all the science but that I get much more than a lot of docs give us credit for.

    1. My guy was younger than me - scary though, those years ARE adding up, whether I like it or not - and has a mother in law with RA, which perhaps gives him that big more insight, since he DOES see the every day effects, where most of them have to rely on us to hear about them, but don't see what it's like day and and day out. But he's quite insistent that he needs input from the patients if he's to treat us properly. He also knows that I'm an admin in an online RA group, and always asks what the discussions are there and what the 'climate' is like, what people are talking about. He's interested in my writing, particularly the writing around RA and has been more than happy to give me the doctor's perspective on issues that I've written about, which has been marvelous. I'm just hoping the colleague he's referred me to down here is as good, I really am!

  4. Karen, there are so many things in this post that I love and agree with that the easiest way for me to comment is in numerical order:

    1. Generalizations - it's an important point that you make and I'm sure that if your mother were here, she would have a twinkle in her eye. To be fair to all of us who wrote about today's prompt, the selection was narrow. Generalize away!

    2. It's important to guard against "becoming our disease". We are so much more. A label is a shortcut, but it does us a disservice. Also, I remember one enlightened doctor once telling me that sometimes the worst thing that can happen to a patient is to get a disease label. He explained that from that point on, it becomes easy to attribute every medical problem to XYZ condition.

    3. You made an interesting decision to entrust your care to your GP. Some good sleuthing on your part re. low-dose Valium. I believe that when a patient has the "steering wheel" the positive feelings they have go a long way to reducing stress, which in turn, can impact the immune response.

    1. Thank you for your feedback, Marianna. Mum would be laughing at me, for sure!
      Yes - I'm fiercely anti-labels...and that's got a lot to do with my refusal to 'become' my disease. Further back in the blog, you'll find a post I wrote about Inspiration Porn - and that was a big part of it. Because it's not necessarily just having medical stuff attributed to the disease (although, that's a biggie, because so many new things can be missed that way), it's also the excuses that can be made, and concessions made unnecessarily.
      At the time I entrusted my care to a GP, I had a wonderful GP who never hesitated to strong arm me if she felt it was appropriate, and we had an entirely collaborative relationship, re my care. So to was the GP I had much later in Sydney - to whit, her refusal to order prescriptions with repeats for the pain meds until such time as I'd been to a rheumatologist and we'd worked out what was going on!

  5. Excellent definition of reactive and active, and you are clearly active, intelligent and educated. Becoming the disease is becoming passive and in some ways feels like giving in, or giving it all over to someone else. We only get one life, and if it happens to include a chronic illness, we have to adapt. And for me, that means taking charge, and being involved in teh decision making. My rheumatologist is the expert in rheumatology, but I am the expert in ME, and on that basis we work together.

    1. I like that distinction on who's the expert on what - I always forget that!