I have a story for you, let’s see how people react.
It’s the story of a woman in her 20’s who was suffering from severe recurring stomach pains. She put up with it the best she could for many weeks but ultimately had to admit there was something wrong beyond the usual indigestion or food poisoning. She phoned her GP to make an appointment, but before she could be granted said appointment she first had to go through a rigorous phone assessment to establish whether her stomach complaint was bad enough to need medical attention, or whether she simply needed to relax more. This assessment went on for over 20 minutes and included questions such as how long has it been hurting? on a scale of one to ten how bad is it? have you tried any over-the-counter remedies? is there any family history of stomach problems? have you kept a food diary? and so on. Finally, and by this point she felt she was required to prove her illness without even knowing what was wrong, she got an appointment to see her GP. Unfortunately the GP wasn’t any more understanding than the person on the phone. He asked all the same questions again, emphasising home remedies and the need to relax more. The woman filled out several multiple-answer questionnaires and was then faced with the question to end all questions: What do you want out of this appointment? ….stunned, confused and suddenly under immense pressure to answer correctly the woman felt her stomach pains worsen as she desperately thought of an appropriate response. What did she want? She wanted her stomach pains to go away! But surely that was an obvious and silly answer…she wanted a course of medication? or a dietician referral? a scan? Was this doctor actually asking her what treatment she wanted?? Was she supposed to have done research into available methods of stomach treatments? It was very confusing. She left the GP with a promise that her case would be discussed at the next meeting and a referral recommended for further investigation, in the meantime take things easy.
Weeks passed. She heard nothing. She rang the GP office but was simply promised call backs that never came and letters that were never delivered.
A month later she received a letter offering an appointment with a doctor at another facility to discuss options. Gratefully and hopefully she went, praying to every deity in history that something would be done. The pain was unbearable but the hospital made it clear they wouldn’t see her unless she was coughing up blood or in cardiac arrest.
To her dismay, the doctor was in fact a physiotherapist. He asked all the same questions again (don’t these people share notes??) and went on to explain the treatment being offered – a 6 week course of physio to teach and enable her to carry herself in a way that would ease the pain and make it more manageable, enabling her to carry out her daily life without disruption. She asked, rather tentatively, about the possibility of diagnosis or treatment to get rid of the pain? The physiotherapist simply looked at her – “we don’t do that” he said. “We focus more on pain management and enabling you to carry on with your days. We go through a fairly fast paced course here. If what you want is a more investigative approach into causes etc then you need a different department. We can’t refer you there but I’ll give you a few numbers and you can try to refer yourself.”
The next few months were a painful blur. The poor woman was passed from department to department, sometimes being granted an appointment, mostly being assessed and dismissed over the phone. All the while the pain was getting worse and worse, she felt faint, weak and breathless. Some days she couldn’t get out of bed at all. Her appetite left her completely and she began to lose weight rapidly. She also lost her job – her employer couldn’t be tolerant any longer of the amount of sick days she was taking, especially without any doctors explanation, she was clearly faking it. Friends got bored with her being “too ill” to go out and so they stopped calling.
One day an appointment came through to see a gastroenterologist at the hospital. No longer hopeful and expecting to be dismissed yet again, the woman went along and explained for the thousandth time her symptoms and, in a last attempt at getting someone to understand, the consequences of these symptoms in her general life. The consultant listened, asked an occasional question and took a few notes. He then did what no one had done in months of fruitless assessments, he sent her for a scan and a blood test. The blood test was done immediately but the scan she had to wait a while for. When all the results came back however, an ambulance was sent to collect her and rush her in for surgery – she had been diagnosed with a stomach ulcer, but it had bled and was in danger of spreading infection to her other organs; her life was in danger.
In physical health system this story would not happen – or at least it would be very rare and no doubt be splashed all over the newspapers. You would get a GP appointment that day, s/he would immediately send you for relevant tests and refer you to the relevant specialist. You would not be required to prove your pain. You would not be required to refer yourself for treatment. You would not be accused of faking it for attention and your friends would be more likely to have patience and sympathy. But this isn’t a physical health story, it’s a mental health story. Replace the stomach pain with depression, or anxiety, or hearing voices or losing time and this story becomes very, very real on daily basis. We have to fight and beg for our treatment. We have to jump through hoops and prove our need. And what we are more often than not offered is a pittance, a token treatment. 6 weeks of irrelevant counselling which focusses on management of symptoms but doesn’t begin to look at root causes. In the case of DID you will be profoundly lucky to meet a counsellor, doctor or CPN who have heard of, let alone trained in, dissociative disorders.
The last few weeks have been difficult. A relapse, an episode, call it what you will; either way my inner strength has certainly been tested. So has my patience with our mental health services. I cannot understand how people, like me, can be left waiting so long, only to be offered irrelevant referrals to see professional with very limited training – or at least training in a field far removed from my condition and needs.
If physical health issues were treated with the same disregard as mental health issues there would be public uproar. Suicide is the leading cause of death in males aged 24-39 and mental health is considered a minor problem for someone to have and 6weeks of CBT is the best anyone can expect. If you need more than that you have to literally fight the system for it. You have to complain, pester, repeatedly present yourself as a desperate case, demean and humiliate yourself by begging for professional intervention. For someone with mental health problems, most of which include some level of self esteem and confidence issues and feelings of helpless/hopelessness, this system is bulletproof screen and unless you are fortunate enough to have family and friends who can fight for or at least with you, it unlikely you will break through.
All we need is to be treated with the same regard and consideration as we are with physical health. Yes the waiting lists are too long and the budget too small, the staff too few and the need too high. But we’re not asking for miracles, just understanding and respect.