The cause of HNPP remains unknown. Only the fact that it is an inherited condition is recognised. According to many websites, it’s considered “painless” or the symptoms are “mild”, which is obviously not the case for many living with the disorder. It definitely makes it difficult when it comes to being believed let alone getting a correct diagnosis.
“Pain is whatever the experiencing person says it is, existing whenever the experiencing person says it does.”
Margo McCaffery, 1968
Living with Hereditary Neuropathy with Liability to Pressure Palsies can be challenging. You may experience pain and fatigue that interferes with daily activity. But yet your family, friends, and even your doctor may not understand your concerns. Also, some people may not think HNPP is a “real” condition and might believe symptoms are imagined.
It’s estimated that every 12.5 out of 100,000 people live with it but may not have been diagnosed. The condition can affect anyone at any age. But it is often misdiagnosed as either its sister disorder, Charcot Marie-tooth syndrome, Bell’s palsy among a huge list of other conditions including mental health issues.
But being wrongly diagnosed is not as uncommon as you think.
An estimated 12 million Americans a year are misdiagnosed with a condition they don’t have. In approximately half of those cases, the misdiagnosis has the potential to result in severe harm.
According to the Scientific American, writer Judy Stone says in cases where a condition is considered “rare”, in one survey, it took patients in the US an average of 7.6 years to be properly diagnosed, after visits to eight physicians. During that process, they received 2-3 misdiagnoses. In the UK, it was 5.6 years for a correct diagnosis.
So what impact does lack of belief have on sufferers?
In the 2008 study The Effects of Failing to Believe Patients’ Experience of Chronic Pain, the authors state: “Pain assessment depends on the patient’s self-report of pain and therefore accurate assessment cannot be achieved unless practitioners believe patients.” Taking a hermeneutic approach, where the methodology of the research is based on human experiences rather than quantitative analysis, patients were approached to record their daily life living with chronic pain.
The results showed that six out of the eight participants felt they were being stigmatised, while the other two, who did not have an issue with being believed both had a long-term physical disability.
“He (GP) was another one who blatantly said to me “I do not believe you are in pain” and he went to walk out the house – he wouldn’t give me pain relief”
“The Effects of Failing to Believe Patients’ Experience of Chronic Pain”, Clarke, K.A et al, 2008
As the authors also report that this could be due to the fact that they may have appeared more credible because they had a physical disability that made the pain appear more visible. The participants said that because they felt they weren’t being believed, it made them feel:
- Like a burden
- Not taken seriously
The report concluded that healthcare professionals “through attitude or actions such as withholding analgesia – demonstrate that they are not accepting patients’ reports of pain.”
It added that while each professional is entitled to their own opinion about the credibility of patients’ accounts but it is a professional responsibility to accept patients’ report and to help patients by adopting a positive and responsive manner.
What can happen with lack of belief?
The even bigger problem that this may pose is the fact that if a patient isn’t believed, it paves the way for doctors to incorrectly diagnosis or even completely ignore that there may be an underlying health concern.
This can be seen in the case of blogger, Nadia Tasher, where her doctors diagnosed her with anxiety, when in actual fact she had the rare chronic autoimmune condition Lupus. It took her 80 visits to a GP in the space of one year just to be diagnosed.
Feel so privileged and grateful to Cosmopolitan for interviewing me and writing an article about my Lupus diagnosis and battle with my GPs. Really hope this raises awareness and prevents people from going through what I did for so long. The story they've written about me is … 'Doctors diagnosed me with anxiety, but I was actually suffering from a chronic illness' If you read this I hope it gives you an insight into what I battle with on a daily basis. My Lupus has been so bad recently I haven't even been able to shower myself. But people don't see what goes on behind closed doors. I'm so lucky to have Dave who cares for me the way he does and gives me the courage to keep fighting. Please share my story and raise awareness. Always always trust your gut instinct. #lupus #spoonie #cosmopolitan #article #mystory #diagnosis #raredisease #raiseawareness Please follow the link > http://www.cosmopolitan.com/uk/reports/a9227995/lupus-chronic-illness-mistaken-for-anxiety-hypochondria/
And there is a whole spectrum of conditions where sufferers appear to face issues with being believed and getting the right outcome. From Fibromyalgia, to chronic fatigue, unfortunately HNPP lists even further below this category of rare disorders. As seen in the report above, until medical practitioners get a little more clued about chronic pain, fatigue, illnesses as well as HNPP, the onus may have to fall upon the sufferer to push for answers.
What to ask a doctor if you feel they don’t believe you
Here are some tips to help you navigate doctors when they are sceptical of your pain.
- Tell your entire relevant story – it’s important that you are able to tell the entire story about your pain. When did it start? What does it feel like? Do any activities make it worse? What makes it better? If telling the story is difficult for you, write it down. If the doctor interrupts you as you are telling it, ask him or her nicely if you could continue before any questions, because it is important that you let them know everything that is going on with you. At the same time, keep the story succinct – the doctor doesn’t need to hear about unrelated events or conversations.
- Medical records – if you have records from previous doctors, imaging (both the imaging itself and any reports from the radiologist), tests, or journals you have kept, definitely give them to the doctor to review. Some patients even send their records, journals, and questions ahead of time if the doctor is open to it.
- Type of doctor – a general practitioner may not know very much about a specific type of pain. Always consider the source of any advice or opinion (medical professional or not).
- Ask questions – if a doctor tells you he/she believes the pain is in your head, ask why they may think that. Sometimes at this point, the doctor will admit that they just aren’t sure how to help you. Ask for a referral. If they don’t know who to send you to, ask them if they have a colleague who might know. If he or she doesn’t have a colleague that knows, get on the internet and look for one right there with the doctor.
- Searching for doctors – if you feel a doctor does not have your best interest at heart, then try and look for another one. It’s more than okay to look for a doctor who listens, helps you feel empowered, and treats your pain seriously. They are out there.
- If all else fails – if you don’t have the option to change doctors, then agree to get a referral for a psychologist – they may actually be able to evaluate your pain correctly and then forward on the paperwork back to the doctor.
- Believe in yourself – it’s very easy to become disheartened when you feel like no one is listening to you. Hence if needs be, practice what you are going to say, and take a list with you, so that you can effectively communicate with them. Another option is to take someone with you who sees the pain everyday and can explain it even better. Your doctor should be a partner in your health, not someone you fight with or against.
You might not be able to change some things that affect your doctor’s attention span, such as the shorter and shorter visit times that are common. But you can take steps to make sure your concerns are heard in the time you have.