The Gatekeepers of Diagnosis

You may have noticed that I’ve an official diagnosis of Hypermobility Ehlers Danlos Syndrome but ‘only’ self-diagnosis for ARFID and autism. And I feel I need to explain that. 

Ever since I can remember, I’ve know I was different. I used to do all those ‘personality tests’ and quizes in magazines. I used to pore over horoscopes and whatnot, in an attempt to understand myself. So I can say, I have thought a lot over the years about what sets me apart from others. Introspection is an amusing hobby. 

I was a weak and sickly child. I’ve always had low energy levels. When I was around twenty, I started having a tremendous amount of pain internally. Various scans and X-Ray’s showed nothing, though my ovaries were ‘too deep’ to be seen and so overlooked. My GP proclaimed I had an ‘irritable bladder’ and gave me pills that did nothing. He never referred me to any specialist. That decision ended up costing me an ovary. 

And that was my first experience of The Gatekeepers. Here in Ireland, to be seen by a specialist, you normally need a referral from your GP, or General Practitioner. They are supposed to do an initial assessment, and then pass you along to someone who knows more than they do. Because they can’t know everything. But, often, they don’t do that because they make judgements and decisions on things they have no expertise in. And, as we shall see, they often don’t refer patients for much more sinister reasons. 

My next experience of a Gatekeeper was when I was pregnant for the first time. I could barely walk as my pelvic joints were too loose, and I was in a lot of pain. I asked my obstetrician to refer me to a pregnancy physiotherapist. He refused, saying it was just a normal part of being pregnant and I’d have to just get used to it. I was too shocked to say anything. 

When my daughter was two, so nearly four years later, I realised the pain I was experiencing couldn’t be from being pregnant anymore. My new GP was great, she had no problem referring me to an orthopaedic surgeon and a maxillo-facial specialist. When those didn’t produce any results (aside from a vague diagnosis of ‘myofascial syndrome’,and being  told I was incredibly flexible for my age) I knew I could rely on her to keep on with the search. Except, she then went and got married and moved to a different city. 

My next Gatekeeper GP claimed to be an expert on rheumatic matters. She referred me to a rheumatologist. Who took a few minutes to diagnose me with fibromyalgia. He claimed to be an expert also on osteoporosis so I asked for a referral for a DEXA scan, as I was worried about my bones due to being underweight. He told me I was ‘too young’ for such concerns, and that he wished all his patients were as thin as I was as it made my joints easier to examine. He then told me there was nothing he could do for my fibromyalgia and he didn’t need to see me again. This diagnosis did not sit well with me, as it was my joints and not my muscles that ached, and it was predominantly on my left side, whereas fibro usually consists of bilateral pain. 

So, I did some research and discovered that I was very Hypermobile, as were my two kids. I went back to my Gatekeeper, and asked whether she could refer me to be checked for Hypermobility Syndrome. That was when she laughed in my face. And told me that EDS was ‘as rare as hen’s teeth’ which meant I couldn’t have it. Luckily, I found a Rheumatologist who accepted self-referrals and I travelled across the country to see him. He diagnosed me and my son with EDS and said he was sure my daughter had it but couldn’t diagnose her formally as she was too young. As you can imagine, I  informed my GP of my diagnosis just before firing her. (She had also refused to refer my son for ASD assessment, saying he was too young to sit through it, even though he was four, which is the average age for assessment. She suggested I take parenting classes run by the Catholic diocese instead)

And so, I now have a new GP Gatekeeper. She has referred the kids to Paediatricians, me to a Cardiologist, and all three of us to Genetics. She never has a problem referring us anywhere. Though she has plenty to say on how she is put under pressure not to refer patients. Because of cutbacks and also a desire to make waiting lists appear shorter. You cannot add to the waiting list if you’re never put on it in the first place. She pushes back against this and refers her patients anyway.  You can see she really cares about them. 

And yet…

EDS, fibro, POTS, neuropathy. These are all diagnosed by medical practitioners. 

Eating Disorders and Autism are diagnosed by mental health practitioners. 

My new GP is a lovely lady. She lives and works around the corner from me. Not even a five minute walk. Our children go to the same school. Our sons were in the same class last year. 

And so I am embarrassed and ashamed to admit to her that I might have an eating disorder. Or that I’m certain I’m autistic. There is an internal stigma against mental health issues there that I can’t seem to shake off. Especially seeing as to all intents and purposes, I appear ‘normal’. I’m not very thin, and don’t fear being fat, and as ARFID is such a ‘new’ eating disorder, even if I managed to ask for a referral, I’m not sure she’d believe me. Or even if she did, I’m not sure who she could refer me to. There are no good Eating Disorder experts in my town. No psychologist specialises in them. 

And as I’m an adult female who has spent a lifetime perfecting the art of ‘passing’ as Neurotypical, I’m not sure she’d believe me if I said I was sure I was autistic. And, again, if she did believe me, I’m not sure who she could refer me to. Most psychologists here only diagnose autism in children. There is a Psychiatrist in Dublin who might diagnose me, and he accepts self-referrals. But he only works privately. I’m actually thinking of bringing my daughter to see him, and can’t afford for him to see us both. Because even for children, getting a referral for public (and free) assessment is nearly impossible if you don’t show ‘obvious’ autistic presentation. And even after referral, the waiting list is nearly two years. 

But I also need to ask myself, even if I do make it past the Gatekeepers, and get a diagnosis, what then? I would not qualify for Inpatient Eating Disorder treatment, as I’m not skeletal enough. Here, they only take you in if you’re at risk of death. Similarly, for Outpatient psychological help, I’d need to be suicidal. I could go privately but at €180 for initial consult and €100 per hour after, I simply can’t afford it. And, like I say, nobody here specialises in eating disorder treatment. 

And for Autism? I’m not sure what treatment, if any, would be offered me. Yes, I’m stressed, yes I’m anxious. But I’ve developed effective coping mechanisms on my own. I’m not eligible for supports or services. So, a lot of hassle and money when really there is no need. 

And so, I’ve decided I’m done banging on gates. I’ll keep doing so for my children. But not for myself. If my GP suggests a referral, like she did for Cardiology, then I’ll take it. But I’m done with seeing specialists who may or may not help me. From now on, I’ll help myself. And diagnose myself. Because I’ve proven I know myself better than anyone else. My mind does not need a Gatekeeper to access it. My introspection can do that by itself. 

  

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