The balance of power, and the need for advocacy

Please scroll down to the DEAR MAN section if you’re just interested in the advocacy side of this post rather than my personal recent history. That part starts at the stars ***

I am finally on adequate pain relief. Thank GOD. A cancellation appointment came up at the end of last week at the Advanced Diagnostic Pain Clinic at Yale, and I went back again on Tues to get my prescription for a Buprenorphine patch. Because it works transdermally (through the skin), it takes a good few days for the amount of drug in your bloodstream to get up to the steady state which is then maintained, and I believe it should be at that point by tomorrow. It has made such a difference already, for the first time in 6 weeks I feel like I’m able to live again. I managed to cook AND bake yesterday, and then go out in the evening. I managed to swim this morning and then take Joe out with a friend and her grandson to an orchard, where we had to walk a long way, and it was hard, but manageable. I am so incredibly grateful, and so relieved.

I’ve been reflecting a lot on the unpleasantness of the last two months over the last couple of days, partially because I’ve been trying to process it and decompress the stress out of my brain a bit, and partially because I found that the situation triggered some really extreme emotional responses in me and I wanted to explore why that was. In the end, it boils down to me feeling incredibly powerless, at the mercy of another human being who you aren’t sure has your best interest at heart, and very, very alone. These were valid feelings given the situation at hand, but are also some of the very basics of the trauma response. This situation triggered many older memories related to medical care and trauma (especially pain management and birth complications), and also older childhood memories. I knew a couple of weeks ago that I was hitting a bit of a crisis point mentally because of the uncontrolled pain and the lack of a good plan for changing that. In agreement with my mental health provider I reluctantly started back on a low dose of the antipsychotic I used to take because it was difficult to separate out which symptom was coming from which issue. Peter and I were adamant that we wanted to make sure that I wasn’t headed for another psychotic episode – this time of the year seems like a danger zone for me. Along with that pharmacological precaution, I have been trying to use the skills I’ve developed over the last decade in order to not stuff my feelings about these things down which just results in other destructive coping mechanisms. I’ve been attempting to observe them without judging and to sit with them for a while if I’m able to, without giving them inflated or inaccurate value or meaning, or being terrified of them. It’s really hard and really exhausting, but does seem to work, at least to some extent. I have mentioned in the previous post that I had been having extreme feelings going back and forward between grief and rage about the whole situation, but a new one reared its head following further contact with my primary care providers. After another difficult appointment where I again didn’t feel heard or supported, and the knowledge that I wouldn’t be able to get a pain clinic appointment until the end of November, I felt such deep despair. That I would have to exist (I couldn’t call it living), without much more than paracetamol (tylenol) and ibuprofen (motrin) for this level of pain was unbearable. I was sitting on my bed before I went to sleep, and felt as if I was in a kind of black hole, where I felt totally isolated and terrified, and not really able to reach out. It didn’t make sense to me at the time, as Peter was also there and was being kind and supportive, but I couldn’t register what he was saying, I literally couldn’t make a human connection in the middle of that pain, and it was terrifying.

It was then that I realised that this feeling wasn’t actually about that literal moment in time, it was a memory, and a very very strong one. Although it didn’t stop the awfulness of that moment it was a huge relief, because I could then talk myself down a bit and rationalise that although I didn’t have all of the support that I needed, that Peter and my therapist were both advocating for me, that there would hopefully be a solution, and we needed to focus on simply surviving until then. Also the extremely strong feelings of powerlessness also seemed to have a memory component, and realising that helped me to be less defensive in my approach towards the medical staff. However, there is an element of reality in that powerlessness. The balance of power in the conventional medical doctor(/nurse/other medical personel)-patient relationship is waaaaaay squewed in the favour of the healthcare provider, and in many ways you are at their mercy. Add seeking pain relief into this which instantly adds red flags to peoples’ approach to you, and then a mental health diagnosis AND being a woman and you really are basically screwed unless you have a really open-minded physician (This article is a good example of how this kind of discrimination can happen: http://www.theatlantic.com/health/archive/2015/10/emergency-room-wait-times-sexism/410515/). I even started to question my own sanity again (hence agreeing to the antipsychotic). and was incredibly grateful that my therapist had kept careful records, and was able to confirm with me that I didn’t start going downhill mentally until significantly after the pain flare had started. It’s horribly complex when you have an interplay of mental and physical health complaints. I firmly believe that there is a mind-body link, but also firmly believe that it is not a black-and-white cause-and-effect link. I find that my mental state enormously affects my ability to cope with pain, but being in a good mental place, having a good attitude towards it and working hard towards a positive lifestyle in terms of diet and exercise does not cause the pain to go away, unfortunately. So often it seems to be implied to chronic pain patients that this would be the case, or somehow to mentally ill people that their pain is a result of their mental illness. This is mostly bullshit, but even if it was true, IT STILL NEEDS TO BE ACKNOWLEDGED AND TREATED!

Back to the powerlessness, I think most clinicians don’t have a clue just how powerful they are, or how their manner or method of approaching their patients is at least as important as what the prescribe or don’t prescribe – it can be literally life or death. I wish I could have made that primary care doctor spend one day experiencing the levels of physical pain that I was, and then add in 3 kids to the mix, a husband who is a shift worker, and a major exam coming up. Even if he had still refused to prescribe (and I respect that apparently that is the majority approach in primary care here in relation to pain control), I think there would be an enormous difference in his bedside manner, perhaps at least some kind of acknowledgement of the suffering that was occurring. I personally feel that bearing witness to suffering is a key element of good healthcare. Knowing that someone cares makes it so much easier, even if they’re then not able to fix the situation or give the care necessary. Knowing that they are interested in helping you to find the care that you need, and provide the support you need to get by in the meantime, rather than just labelling you as a difficult patient and wanting you out of their sight as much as possible.

***This brings me to the final part of this post – advocacy. I have survived the last two months because of advocacy – by my husband, by my therapist Kim, and by myself when I have been able. They have been able to vouch for me due to knowing me well where the primary care physicians haven’t, and have been able to do research and help me to get the care that I needed. And they have given me hope, that this wasn’t a permanent situation, and that I wasn’t going to be left in this half-life forever. Advocacy is important in all parts of life because we all have times where we are not able to speak up for ourselves, whether it’s our kids because of their age and immaturity, ourselves due to physical or mental illness, or the vulnerability uniquely found during pregnancy and childbirth. We all need advocates, and we all need to be advocates. It’s really tricky though, to put across a case for something or somebody when the circumstances and factors make the picture unclear. A few weeks ago a useful app called ginger.io which I use since it was recommended to me by my therapist published a post about advocacy. It was so helpful, clear and concise that I wrote to them and asked if I could reproduce their work here. They said yes! So here it is:

They use the mnemonic DEAR MAN, which is broken down like this:

D: describe the facts of the situation

E: express your feelings

A: assert yourself by asking clearly what you want or don’t want

R: reinforce the other person for listening and responding to your needs

M: stay mindful of your objective and purpose

A: appear confident by making eye contact and speaking firmly

N: negotiate by being flexible or open to alternatives

An example of this in action would be a situation where a roommate “Josie”, might not be contributing fairly to household expenses. “Josie, I wanted to talk with you about contributing to household finances (DESCRIBE). I feel frustrated because I’m also struggling financially now and trying to keep everything as fair as possible (EXPRESS). I would appreciate it if we could total up our household expenses and split them evenly going forward (ASSERT). I think this will help keep tension in the household down and I’ll be less stressed as a result (REINFORCE)”, If Josie changes topics, redirect to the task at hand (MINDFUL). Make eye contact and keep your tone even (APPEAR CONFIDENT). And be open to Josie’s ideas and suggestions (NEGOTIATE).

(CREDIT: Ginger.io)

I think is an absolutely brilliant breakdown of how to advocate for yourself, or for others. I will say though that advocacy can only work if there is a level of understanding on the part of the other person in the situation. The second appointment I had with the primary care doctor went badly even with me using this approach, it was evident within about a minute that there was nothing that was going to change his mind and that keeping on trying was probably futile. In that situation, even my husband and therapist advocating for me only got so far. In contrast I approached my pain clinic appointment like this and it went fantastically – the doctor was open-minded and compassionate, genuinely interested in my past medical history rather than blinded by my psychiatric diagnosis, validated my experience and assessment of the recent history, and was open to discussion and negotiation. So yes, it has to work both ways, but if you can go into a situation un-defensively, with strength combined with flexibility and open-mindedness it really really helps.

I hope some people might find this helpful, I know that I would have done if I had found it earlier in the journey. Oh, and I still managed to take my exam, despite not being on much pain relief at that point. Results could be interesting!

Jenn

Ginger.io is a health promotion and monitoring app which can be used by individuals or linked to participating healthcare providers. It provides a way to track your mood and symptoms, along with articles/advice for health promotion, and information on where to get extra help if you are in crisis. Check out their website at: http://www.moodmatters.org

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~ by jennkeast on November 14, 2015.

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