‘I’m not seeing a doctor!’ I insisted with a look on my face that was intended to end the debate once and for all. As far as I was concerned, it was simple: I wasn’t going to the hospital, walk-in centre or GP surgery, because I couldn’t go. I couldn’t cope with going. Such was my abject terror that, unless it was a matter of life or death, I avoided all things medical.
The problem? This was rapidly becoming a matter of life and death.
‘You’re yellow,’ my friend pointed out, glaring at me scarily. ‘You’re seriously unwell. I need to take you to A&E, and we need to go now.’
A short while later I lost consciousness, and the argument with it. I recall the shudder of a gurney moving at speed and someone shouting, ‘Get her into majors now.’ Being jaundiced was a minor issue right now.
A week-long stay in hospital didn’t help my phobia much, but the blocked bile duct and threat of pancreatitis put me back into regular contact with a GP. Despite having chronic health problems, I had done my best to avoid all contact with doctors for years. Now also having had a breakdown and manifesting dissociative parts of the personality, it was complicated, to say the least.
I’ve met lots of people who after a history of severe childhood trauma have a phobia of medical procedures. There is a common experience of body-shame, not wanting to be touched, not wanting to be powerless, not wanting to lie down, not wanting anything that’s invasive. The vulnerability of it all feels scarier than death itself. Like me, many people with DID also fear being ridiculed, not being taken seriously, being accused of time wasting or attention-seeking, and of switching. I was also loathe to have my abuse history or dissociative struggles inscribed on my medical records.
There are many reasons why dissociative survivors struggle to engage with health care and its associated professionals—complex, multi-layered reasons which many time-pressured nurses and doctors simply cannot fathom and some do little to understand.
My salvation in this arena was largely due to a particularly caring GP. She is the sort who is always late. If you have an 11.00 am appointment, you can guarantee you’ll be thumbing through House and Garden still at midday. Because she talks to her patients. She listens to them. She gives them time. And she suffers a fair deal of flak, from some patients but mainly her own colleagues, for her generosity. I have sat willingly in her waiting room for many a morning because it’s a fair trade: she’s given me time when I’ve most needed it.
And so she built up my trust again in doctors and nurses.
Over the years I’ve needed to see her a lot. Alongside dissociation, I have suffered from chronic fatigue syndrome (CFS/ME) since I was 15. I have had enduring chronic pain. For many years my immune system was so depleted that I suffering numerous infections each year, often requiring antibiotics. I suffered a back injury in early adulthood that has never properly healed. My digestive tract has been a mess. Quality sleep eluded me for many years, often requiring last-ditch medication to break the cycle of insomnia. And my body has had a tendency to overreact to things as innocuous as mosquito bites. My GP’s support with all of these issues over the years has been invaluable.
But what about help with my mental health? I could answer that question two ways. At one level, she has been—quite frankly—useless. I have frequently told the story of how, at the height of my breakdown, I went to her in desperation and she said to me, ‘I’m not referring you to psychiatric services because you’re in enough of a mess as it is.’ Such was the contempt with which she held her colleagues in psychiatry. Nor did she offer me an alternative. She simply prescribed ‘fire extinguisher’ medication, to take the edge off, and encouraged me to carry on seeing a counsellor. ‘Come and see me next week,’ she said, almost every week. And every week, I think, she was relieved to see me.
I could easily be outraged at the lack of help. But actually in many ways it’s been the most helpful thing she could have done. She truly believed that I wouldn’t benefit from being part of the ‘system’ of mental health care and that I was on the right tracks maintaining my autonomy and freedom in pursuing humble counselling. She believed in me, and I have done my best to repay that faith. I have always believed that she has cared deeply about my wellbeing, in a way that supersedes ‘treatment pathways’. She’s treated me as an individual, and that has been gold-dust.
She prescribed what she thought would help: pain relief, proton pump inhibitors, Z-drugs for sleep, anxiety-relief. Always with a discussion about the need for it to be short-term. On a couple of matters I’ve come to believe that her prescriptions have made things worse rather than better (I’m looking at you, amitriptyline) but I think few doctors are aware of how pernicious a drug it can be, and how debilitating its side-effects (fatigue, weight gain, mental fuzziness). She saw me in pain and she saw me chronically incapable of sleeping, and so it was her best attempt to help. You can’t win ’em all.
At no point has she ever understood DID, or even really taken any steps to try to understand it. But she has always believed me. She asked me to spell it for her once, and dutifully typed it into her notes. She grasped what I was saying about the impact of childhood trauma on the way that my brain processes information, and that was enough for her. I think she figured that I’d find the solution in therapy, so what did it matter what it was called, or whether she understood it? Her role was to support me and believe in me and encourage my wellbeing, not to understand absolutely everything. She was never trying to be a therapist or psychiatrist.
She saw the dissociation and the impacts of trauma up close and personal when she herself was up close and personal performing a smear test and fitting a coil. I was understandably triggered and became a little distressed. She phoned me later that evening to check how I was doing. She was visibly upset by having, in her mind, caused me that distress. Of course it wasn’t her fault. The next time, she planned the whole thing meticulously but was then apoplectic with embarrassment and shame when there was a power cut mid-procedure and she ended up having to use a torch to find my cervix. I was really quite amused by the whole thing (at least in retrospect), but she was desperate not to distress me or make me come back for a second attempt. That kind of care only comes through a carefully cultivated relationship built up over more than a decade, full of mutual respect.
I’m sure many people, reading this, will be thinking, ‘Lucky you! If only I had that kind of relationship with my GP.’
I do believe I’m lucky. And I also believe that there are certain principles which can help us to increase our ‘luckiness’. Over the years I have had numerous conversations with survivors asking for my advice as to how to go about discussing DID with their GP, or how to plan for an unwanted but necessary medical procedure. I don’t believe that we are helpless victims of our relationships, including our professional relationships. I believe there are things we can do to oil the wheels of collaboration. And in particular I think there are a lot of things we can do to get the most out of GP appointments. So here are my three top tips.
1. Understand your GP’s limitations
It may sound hypocritical of me to say, ‘Stick to a ten minute appointment’ when my own appointments frequently ran much longer than that. But there’s a subtle but crucial distinction: I never asked to stay longer than ten minutes. I always made it clear that I respected my GP’s time. Sometimes at the beginning of an appointment it was clear that she was busy and harried and stressed, and so I didn’t linger. Because I knew that I wasn’t entitled. The NHS is an incredible resource and service in our country and we should be grateful for it: talk to Americans without health insurance with DID if you want some perspective. We have so much to be grateful for. And even if the NHS is underfunded, it’s not the GP’s fault. The GP isn’t responsible for the increased burden of need from an ageing population. So don’t take out your frustration on them.
There are distinct limitations about what a GP can do for you in any one appointment. They have a long list of patients to see, all presenting with any number of different issues, some potentially life-threatening, and they have ten minutes to meet the needs of each one. As you walk in the door, the GP wants to quickly figure out what the problem is, and what the solution may be. They want to move from not knowing anything to knowing enough to suggest next steps. That’s a highly pressured environment for them, especially when they have such little time in which to diagnose (or miss) cancer, meningitis or an impending heart attack. Get it wrong, and the patient dies. To me that is an unimaginable level of pressure. It explains why my GP may not always appear delighted to see me.
A ‘next steps’ paradigm can be really helpful. Often we go to the GP with a problem, and we hope that in one appointment the problem will be solved. In reality, the GP can test, prescribe or refer. Very rarely can they solve anything in one go. And with something as complex as a dissociative disorder, and the chronic health problems associated with childhood trauma, it’s totally unrealistic.
In all likelihood, your GP will not be able to give you what you are looking for. They cannot immediately refer you to long-term, phase-based, trauma-informed therapy. Some people have been successful after a long battle with their Clinical Commissioning Group or local Mental Health Trust in getting therapy with the Clinic for Dissociative Studies in London but overall it’s a relatively rare outcome. A GP can only offer what the NHS as a whole offers—they are not being awkward or unhelpful or withholding treatment from you. They are just operating within the guidelines and procedures that they are contracted to work within. The trick from our perspective is to use your ten minutes to achieve something.
So what do you want from this appointment? What can you and the GP achieve together in the next ten minutes? What ‘next steps’ might be appropriate? What is realistic and feasible?
You will instantly eat up the allocated appointment time if you try to tell your life story. Your life story matters, but this is not the context for it. It’s not necessary. Neither does your GP need to know the names and apparent ages of all the parts of your personality. A GP is not a therapist. It’s vital that you understand their role as the gatekeeper of further services, rather than expecting them to be the solution themselves. When people ask me, ‘How can I get my GP to understand DID?’ my reply is always, ‘Don’t even try.’ The point of a GP appointment is not for you to educate the GP; the point of a GP appointment is for the GP to assess, diagnose and treat, and this will be their focus. They know they don’t understand and they also know that they will not understand in the next ten minutes. So their focus is invariably on what they can actually, practically do. It’s not that they don’t care—it’s that often they’re being pragmatic. And they’re being pragmatic so that they can help you.
2. Prepare for your appointments
If you had five minutes to pitch to Dragon’s Den, I bet you’d spend some time preparing that pitch. You’d know that your chances of securing an investment are dependent on putting your point across concisely. A GP appointment is an investment in your health, and yet very few people ever prepare for them. They go in and tell long rambling stories. They talk about how they’re feeling. They treat the GP, again, as a therapist. And if you do this often enough, I can guarantee that your GP will feel rising dread when they see your name on the appointment list. They want you to tell them only what’s important so that they can do their thing. So before you go into your appointment, write down what it is that you’re looking to achieve in the next ten minutes. What’s the result you want? What’s realistic to be achieved? Plan for it.
For dissociative survivors, engage every strategy at your disposal (and if you need to, develop some more!) to ground and stay present. Your GP does not want to have a conversation with your 6-year-old self. This is not a case of them ‘not accepting DID’ or ‘not believing you’ or being ‘anti-DID’. This is simply a case of time pressures. If they don’t know anything at all about DID, don’t be surprised if they freak out and jump to conclusions, that you have a psychotic disorder. Do your best to present in your most adult self, in order to advocate for yourself, to get the best outcome you possibly can. If you need to, take someone with you. Just don’t waste the appointment and then blame it on the GP.
If you want to talk labels, use language that your GP will understand. I always suggest referring to trauma, and if necessary calling it complex PTSD. It may not be entirely accurate, but they have more chance of understanding you—and not thinking in terms of schizophrenia or borderline personality disorder—if you use reference terms with which they’re already familiar. If you talk about DID you run the risk of them thinking it’s an internet fantasy. If you want more credibility for it, get a copy of our Information Leaflet for Professionals (but don’t be surprised if they don’t read it).
3. Treat them as you want to be treated.
Your GP is not the enemy. Don’t fall into the trap of ‘transference’ and assume that they have the same motivations and malicious desires as the people who abused you. Harold Shipman and the occasional rogue doctor aside, the vast majority of GPs practice medicine because they want to help people. You wouldn’t like it if they jumped to conclusions about you (time-wasting, attention-seeking, lazy, dishonest), so don’t jump to conclusions about them either.
They will get it wrong. They have not lived your life. They have (probably) not suffered your trauma. They will not understand. They will not be perfectly empathic. I remember one GP I saw telling me that it was impossible for me to have picked up an STD from being abused. Her frame of reference was that ‘abuse’ referred merely to groping. She had no understanding (remarkably) that abuse can, and often does, involve penetration. She also assumed that the abuse had been perpetrated on one occasion only and by one person only. She talked to me like I was the stupid one.
Admittedly, her ignorance was shocking, bordering on unprofessional. But she’s only human. Having the title ‘Doctor’ in front of her name doesn’t safeguard her from making mistakes and being wrong. I hate it when I make mistakes and am wrong and people shame me for it. So I didn’t want to do that to her. I let it slide. What is the point wasting energy being upset at someone just being mistaken?
Some GPs may be so misinformed and so unempathic that they are a completely inappropriate match and you will be better going to see someone else. In which case, do so. But don’t get into an adversarial relationship with your GP. They are one of the best allies you can have. Don’t fight them. Instead, collaborate with them to achieve mutual goals. A GP has the goal of improving and protecting your health and wellbeing. If that’s not your goal, there will be conflict for sure. Sometimes they advocate for our health (yes, that’s why they talk to us about smoking and drinking and diet—not to shame us, but to care for us) and we don’t want to know because self-neglect is our default. We have very good, trauma-based reasons why don’t look after our health, but it’s incredibly frustrating to a GP. On the one hand, we are arguing for therapy (suggesting we want to get better), but on the other we won’t address our pre-diabetes (suggesting we don’t.) They often see this as hypocritical and contradictory.
I was like this for some time: I had a hard time just getting through each day, so things like diet and blood pressure weren’t high on my list of priorities. My GP and I had a very useful conversation about it one day and got on the same page: I assured her that I wanted to prioritise my health but that I needed a bit more help before I could address some of the issues she was trying to draw my attention to. She heard that I had heard her. We agreed on a plan and a way forwards. She was able to stop nagging me, as I committed to that plan, and she also formulated how she could help me get to the point where I could move forwards with these previously taboo issues. So it was a collaboration rather than a conflict.
You don’t have to agree with everything your GP wants you to do, whether that’s a particular medication or a desire to involve (or not involve) psychiatric services. I had to understand for myself that I didn’t have to reenact abuse dynamics and go into a submit role of playing the good girl. But neither did I have to go to the other extreme and become argumentative and uncooperative. In effect, I had to be adult in my response. A good GP will want to work with you on a solution that works for you, rather than imposing one on you, because they know that unless you’ve invested in that solution, you won’t take the tablets or turn up for appointments or do whatever else is required of you. So do express your opinion and your fears, but also make an effort to meet your GP at least halfway. You wouldn’t be impressed if they didn’t take your opinion into account, if they refused to listen to you, and if they greeted every suggestion you made with a surly pout. So don’t do the same to them.
This whole thing is about collaboration. A GP is committed to improving your health, and so to work well with them you have to get on board with that intention. Collaboration is about being on the same side and working together for the same outcome. The GP is not the enemy, but the GP is not a saviour either. I have never seen mine as a miracle-maker. I have seen her as a frontline agent of the NHS, with the ability only to offer the services that she is authorised to offer. The lack of appropriate services for DID can be demoralising, but that doesn’t mean that you are helpless. Your health is much more than just DID. Build a relationship with your GP so that they will be able to help you in whatever ways you find difficult—smear tests, childbirth, injections, eating disorders, self-harm scars, contraception. They want to help. And the more you can get them on side, the more they will be able to help. Appreciate that.
I wish I could clone my GP and send her out to work in every surgery in the country! But I also know that she is not unique. There are a lot of good GPs out there. Mine doesn’t understand the first thing about DID. She’s just a thoroughly decent human being. And I have worked hard to build a positive relationship with her over a number of years. So focus on what you can achieve with your GP; treat them well; respect their limitations; be gracious. You may be amazed at how supportive they can be, and how much of a difference that can make to your life.
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It might have been ‘just a routine blood test’ but that didn’t stop me passing out. Again.
From a teenager through into adulthood, even the word ‘medical’ could render me light-headed. For a long time I didn’t understand why I was such a ‘wuss’, as I saw it.
Trust is built
‘Trust me,’ says the therapist.
And everything in me wants to curl up and away, disappear some place in my head, and never come back.
It is an understatement to say it, but those two words are a massive trigger.
It’s a pain: the physical impact of trauma
Physical symptoms are a big part of life for me with DID. Yes, I have ‘multiple personalities’, but I would say that physical symptoms such as chronic, unexplained pain, headaches and nausea have been and still remain far more distressing and life-impacting for me than the presence of parts.