The No.1 Myth about Pain is exploded with 5 Simple Facts

What do we think we know about pain?

The traditional theory of pain suggests that an isolated pain system carries messages from pain receptors in the skin to a pain centre in the brain. This is called the Specificity theory and it is commonly taught as fact, rather than theory.

Contrary to popular belief, the connection between a damaged organ and pain is not straight forward and direct.

Consider the highly variable link between injury and pain: injury may occur without pain, and pain may occur without injury. - Click to Tweet

"We are learning to accept that pain is not produced by the simple activation of a single, specific, isolated signalling system but is subject to a series of controls acting in the context of a whole integrated nervous system." (The Challenge of Pain p.295)

Examples of the Variable Link between Pain and Injury:

1. Injury without Pain (Congenital Analgesia)

Some people are born without the ability to feel pain.

Without pain acting as a warning and a teacher the following situations can occur:

• Biting into tounge while eating.
• Failing to feel pain when walking on a leg with a cracked bone would cause you to walk on it until it broke completely.
• Failing to feel discomfort when remaining in one position too long would mean that you don't shift your weight and sustain damage to your joints and ligaments.

The fact damage can sometimes be present, without pain being experienced, shows that pain is not a simple signalling system with a direct and straight-forward relationship with a site of disease/damage.

2. A Delayed Response to Pain (Episodic Analgesia)

When injured, it is quite common to feel no pain until hours afterwards.

It doesn't seem to make a difference if the injury is minor or severe, a graze, or a severed limb. And it's not that pain is noticed and then brought under control. There is simply no pain.

Many of us have accepted the delayed pain response as a common phenomena, allowing us to accept that pain is a complicated thing.

It starts to become clear that there are a number of complicated processes that determine the intensity and duration of pain - factors which bear little relation to the scale of ones physical injury.

Newer theories of pain such as The Gate Theory look at what activities of the nervous system intervene between injury and pain perception and start making sense of why the relationship between injury and pain is so variable.

3. Pain without Injury

There are some pains that do not appear to result from a direct relationship with injury or damage.

For example:

• Tension headache and migraine are two examples where the origin and cause of pain is not known or understood.
• Trigeminal Neuralgia - where a light touch to a trigger point provokes an agonising stab of pain.
• Crippling lower back pain where diagnostic techniques can find no damage.

All of these pains are likely to result from a "failure in the function of central control mechanisms." (The Challenge of Pain, p.9) see also What are Functional symptoms?

Traditionally these pains are a source of great frustration, but as pain begins to be recognised not as a symptom of damage but a problem in it's own right, these pains prompt a greater understanding of the nature of pain.

4. Disproportionate Pain

It is commonly assumed that pain is a simple mechanism to communicate a warning, but in many cases the pain response is not proportionate to the problem; the problem being far more severe or far more trivial than the pain it provokes.

For example:

• Passing a kidney stone is famous for being excruciatingly painful, but from a mechanical point of view, passing a kidney stone is a trivial event.

• There are also relatively small number of nerve impulses sent to the spinal cord when a kidney stone passes through the ureter - despite this, the effect in pain is gigantic.

Clearly, severe pain does not automatically indicate the body is severely damaged.

5. Persistent Chronic Pain long after the injury is healed

Persistent pain can be experienced year in year out long after an injury has healed.

Examples include:

• Phantom limb pain "where the limb is incapable of producing pain, yet pain is constantly felt, though no injury is occurring." (The Challenge of Pain, p.10)

• Peripheral nerve damage that produces excruciating burning, shooting, stabbing pains that may occur spontaneously long after the tissues have healed.

• Minor commonplace injuries can also provoke the onset of severe pain that can persist for years; pain that may take the form of spontaneous attacks not dissimilar to those described above.

This is in direct contrast to pains which prevent an injury or enforce inactivity and rest. In these cases the pain serves no biological purpose.

"Chronic pain can even be detrimental to the survival of man. The pain can be so terrible, so feared, that people would sooner die than continue living with it."  (The Challenge of Pain, p.12)

It is not helped, that while the traditional understanding of isolated, direct, and easy-to-understand pain persists, support and understanding for chronic pain suffers is limited.

"Acute pain which is the basis of the traditional training of physicians is wonderfully controlled by our modern day drugs. Chronic pain, however, requires a new set or rules, and we are still novices in these new approaches to pain." (The Challenge of Pain, p.273)

Happily, examples 1 - 5 above contain clues for the control of pain in all it's shapes and sizes, and pain is no longer considered a symptom, but a syndrome in it's own right. - Click to Tweet

Sadly, for those with pains we don't understand, or for which we have no adequate treatment, new solutions for pain relief can't come soon enough.

Fighting for Legitimacy: What is the impact of being labelled a scrounger?

Yesterday I read an article by Penny about the “Psychological impact of being labelled a scrounger” which has prompted me to share with you the following realisation.

All sick and disabled people are beginning to experience the same social implications that people with MUS (Medically “Unexplained” Conditions) suffer:

• Lack of Support
• Uncertainty, 
• Lack of credibility and legitimacy, and 
• An impact on self and social identity, to name a few. 

According to Dr Sarah Nettleton, who has researched the impact of not being given a disease label or diagnosis, these are just some of the themes which characterise the MUS experience. In this article I will be explaining that the MUS experience is no longer exclusive to people with MUS.

In this article will draw some parallels between the MUS experience and what is happening to all long-term sick and disabled people in this country. This is my analysis, using some of the headings from Dr Sarah Nettleton’s research paper:

Lack of Support

• Disabled people are facing the removal of recognition, understanding, and compassion. Society as a whole is being told by newspapers and politicians that sick and disabled people are undeserving scroungers. The support that was once in place within society, both in spirit and in practice, is being rapidly dismantled. Disabled people are more likely to face interrogation and abuse than support and understanding.
• People with disability are increasingly experiencing feelings of isolation, desperation, and the sense there is no where to turn to for help. The government is not listening, the general public is widely misinformed and hostile towards disabled people. Meanwhile, the DWP (Department for Work and Pensions) — who administers disability benefit and, in so doing, authorises the social “passport” that gives ones disability social legitimacy — is not just rewriting the definition of disability but undermining the credibility of all benefit claimants.

Uncertainty

• The Conservative-led Government is cutting services so fast and so deep that it is impossible to plan for the future and know how to understand and accommodate the proposed changes in the Welfare Reform Bill. We can’t calculate their effect on our lives, we are uncertain about whether we will ‘be okay’. 
• When the government first published its intention to “reform” Disability Living Allowance (read “abolish”) and replace it with PIP (Personal Independence Payment), its intention was clear: reduce the number of claimants by 20%; ignore the fact that fraud and departmental error adds up to a mere 0.5%. So while we could be sure that the government intended to reduce the eligibility requirements we were uncertain, and remain uncertain, exactly how eligibility will be established and how we will be judged. (“Uncertainty is compounded by lack of information”).
• Disabled people are asking themselves “when will this reform effect me?”, “how badly will these cuts effect me?”, “How can I possibly cope with more stress and uncertainty?” (Disabled readers please contribute to this list in the comments section below). 
• With uncertainty about how government cuts will effect the support and services, planning for the future becomes impossible.

Relationships with doctors

• On the one hand doctors are given more responsibility by the government (managing their budgets) and on the other hand are told that their medical opinion no longer has the authority or reliability with which to base a decision for benefits (instead an independent company is employed). Where patients need reassurance and support more than ever, doctors are being worn down and disenfranchised.
• In the same way a person with a medically unexplained condition seeks acknowledgement of their experience from their doctor, a disabled person now arrives in the same position: equally anxious, potentially suicidal, and uncertain about the social legitimacy of their medical condition. What both groups now share is an emotionally fraught situation:
• The patient is wanting the doctor to authorise their experience of disability with words that can be universally understood: by the nosy neighbour, the government agency, the employer, the family, and the patient themselves who is suddenly feeling much less confident about explaining their condition to themselves and others.
• The doctor is wanting to make the situation better but is powerless to do so and struggling to accept their limitations because they went into the profession to ‘fix’ problems and ‘make people better’.

Lack of credibility and legitimacy

• I think this is the no. 1 biggest issue facing people with Medically Unexplained Illness, and now the whole population of sick and disabled people. When you don’t get better, people want to know why. When your health limits your ability to function, people want to know why. But people with health problems “just want permission to be ill”. Permission to have a bad day without being labelled a faker. Permission to have a good day without being labelled a scrounger.
• The software designed for ATOS Healthcare Work Capability Assessments has been described as reminiscent of UNUM Insurance “disability denial software” because we are facing a check-box system determining the legitimacy of a persons medical condition and, in the face of extra cash per failed claim, an incentive to contradict the informed opinion of a GP or specialist. Meanwhile, the media, politicians, and even the DWP are publishing misleading information about the credibility of sick and disabled benefits claimants.

Influence on the ‘self’ and social identity

• Although the sick and disabled recognise the authenticity of their symptoms, as verified by their doctors and their daily experience, they can’t help questioning themselves when they have a good day. Many may find themselves asking “Do I deserve disability benefit?”, “I feel better than I did yesterday, am I a scrounger because I am finding it easier to move today?”.
• In fact I think the impact on a persons sense of self, personal wellbeing, and social identity is huge. If you are effected by any of these issues I would appreciate it if you would comment on this in the comments section below.

Searching for explanations/justice

• Although some people can accept that reform may be needed, it's still important to them that they see changes that reflect the experience of disabled people and their needs. The government have scared disabled people and their friends. They are asking:
• “How will eligibility be decided?”
• “How will you protect the wellbeing of disabled people throughout the process of reforms?”
• “How can you commit to cutting 20% of claimants on the assumption that half a million people don’t ‘deserve’ or ‘need’ to access the funding, care and support they require to function and live ‘normally’, despite their disability?”

To conclude, a sinister shift has occurred in the fabric of our society, spurred on by political propaganda. It is no longer enough to have a medical diagnosis or receive disability benefit. The existence of disability is under dispute. If you are effected by any of these issues, I welcome your comments below and would especially love it if you expanded on any of the points I have made above.

10 ways you can help someone with depression

Do you actively want to make a difference by 'being there', as a friend; a family member; someone who cares? If you know somebody who suffers from chronic illness of any kind, I believe this post will help you identify ways that you can show care and support.

This is a subject that is very close to my heart at the moment. My partner has been suffering with painful, debilitating symptoms for over eleven years and has become increasingly isolated. Very recently, we learnt that the normal functions of a persons nervous system can become disrupted as a result of chronic pain or depression and he has embarked on a relatively new course of treatment. The treatment works directly with the physical symptoms in his body in an effort to restore the normal operation of the nervous system. The process is emotional, nerve-wracking, uncomfortable, and unfamiliar. At times my partner feels even worse, not better. It is taking a lot of effort in his part. And what keeps coming up now, every day, is the grief and self-doubt that is a result of social isolation. All long term health problems can cause isolation and I will probably write about this another time, it is not unique. But what breaks my heart is that one person (me) is not enough to convince him that people want him to get better. His family, friends, busy with their own lives, don't know that anything is changing; don't know how bad things got, and that he needs them now because he is trying to piece his life back together - and he needs other people to think that it's worth it; that he's worth it.

My partner does suffer from depression but I feel very strongly that many of these tips below also apply to chronic illness of any sort, even if it doesn't involve depression. People who suffer chronic conditions are often made to feel bad for not getting better; they are less available to go out with their friends; and although their symptoms are a daily hinderance, they don't want to bore their friends with being honest about how they're feeling: not very well, as usual. I remember a friend saying that when a close loved one dies, people stop asking and showing they care after a while, even though it hurts forever. It is the same with chronic illness, in the first couple of weeks people will acknowledge that you're in a bad way with thoughtful acts of kindness - after a while they can start behaving like they're bored of you! Are you bored of your friend or loved one? I don't think so. Show them you care about their wellbeing by practicing your favourite tip from the list below.

Advice for Friends and Family.

1. Remember that they cannot help being affected by a depression.

• A person with depression cannot 'snap out of it' and you cannot cure it for them. It is not just sadness which can be waved off with a few kind words. It goes far deeper than that. If you are going into this with the heroic notion that you can somehow "fix" it for your friend, spouse or relative, then you need to disavow it immediately. Operating on this assumption will only frustrate you and does no one any good. Read more on my blog post: the dangers of trying to fix it...

2. Encourage him or her to talk and listen to what they are saying.

• Don't ask very general questions; you won't get a meaningful answer. As an example: Rather than asking "How are you?" ask "How are you today compared to yesterday?" or something of this kind. Make the question open-ended, so the person can say what he or she wants, but provide something specific for them to talk about.
• Don't be afraid to let them talk about whatever they want to. Even if they mention self-injury, or they are suicidal, you are not endangering them by listening. Actually, you are helping to protect them from those things; talking helps them deal with these feelings.

3. Let them know that you care about them.

• Little things go a long way for someone with clinical depression. Small gifts and favors seem much bigger to them than to you. Don't be afraid to (for example) leave the person a short note with a smiley face on it. Even if it seems silly or hokey, small considerations will help.
• Being prepared to listen and hear what they are saying, even if the persons emotions are uncomfortable for you both shows that you care.
• Some people find it very difficult to listen to people who are in so much pain, and their own emotions can get in the way of fully being able to 'be there' for the person who is depressed or in pain. If this is you, do encourage your depressed friend or relative to find someone they can talk to about their feelings, and most importantly, remember that staying away and loosing contact for weeks on end will give the impression that you don't care.

4. Help the person to feel less isolated. Depression (and long-term illness of any kind) can be a very isolating experience.

• Stay in contact with them: send a card, give them a ring, visit them in their home, send regular text messages so the person knows you are thinking of them.
• Try to get the person out. He or she will want to isolate themselves —hibernate, even— but this is exactly what should not happen. Take walks, go shopping, go to a movie, whatever you have to, to get the person out of the environment they are trying to take shelter in. You may get some resistance, and even complaints; be persistent but not unreasonable.
• At times, it may seem that the person is actually pushing you away. This is very likely true. Most depression patients believe that they unduly affect those around them and will do anything to prevent that from happening. Thus, they isolate themselves from others. This kind of self-sabotage is actually a symptom of the illness itself. Don't let it overcome your relationship. Try to understand that this is often involuntary and irrational, and act accordingly.

5. Help them to feel good about themselves by praising daily achievements.

6. Encourage the person to look after themself. People who are depressed are very harsh and critical with themselves so this is a big ask - asking them to be kind to themselves. Don't say "try not to be depressed" or imply that they can easily feel better "if they just do...". Trust the persons ability to know what is right for them and instead of prescribing what you think they should do, listen to what they are finding difficult and encourage them to think about how they can support their own wellbeing. The result may simply be that your friend or relative becomes able to avoid some of the activities that make him or her feel worse, or identify his or her 'coping strategies'.

7. Find out about support services available to them and to you (self-help groups, out of hours emergency support, helplines, etc).

8. Encourage them to visit their doctor, and ensure that they take any prescribed medication as directed. 

9. Remember that no one wants to make your life miserable by being depressed. Try not to view someone else's depression as your own affliction. Rather, be grateful that you don't have clinical depression and try to realize what the other person is going through. Don't take the things your friend, spouse or relative says/does, personally. They aren't meant that way.

10. Remember there are ups and downs in depression recovery. It is neither swift, nor steady. Your friend or relative is going to go on the decline, now and then. Don't think it's because you are failing them or they are not trying hard enough. The "roller-coaster" effect is just a part and parcel of depression.

This blog post takes excerpts from The Depression Alliance: Advice for Friends and Family section, and the article "If you know someone who is depressed" at the 'Healthy Place' website. You can click the links for the original articles.


Talking to Someone Who is Depressed 
Advice from the Depression Alliance: Original Article

DO SAY
1. You're not alone in this.
2. You are important to me.
3. Do you want a hug?
4. You are not going mad.
5. We are not on this earth to see through one another, but to see one another through.
6. When all this is over, I'll still be here, and so will you.
7. I can't really understand what you are feeling, but I can offer my compassion.
8. I'm not going to leave you or abandon you.
9. I love you (if you mean it).
10. I'm sorry that you're in so much pain. I am not going to leave you. I am going to take care of myself, so you don't need to worry that your pain might hurt me.

DON'T SAY
1. There's always someone worse off than you are.
2. No one ever said that life was fair.
3. Stop feeling sorry for yourself.
4. So, you're depressed. Aren't you always?
5. Try not to be so depressed. Snap Out of It. Man Up.
6. It's your own fault.
7. I think your depression is a way of punishing us.
8. Haven't you grown tired of all this me, me, me stuff yet?
9. Believe me, I know how you feel. I was depressed once for several days.
10. Have you tried chamomile tea?
11. Please don't tell a depression patient that "you understand."

Excerpt from the Healthy Place:
"Please don't tell a depression patient that 'you understand.' Unless you, yourself, have experienced clinical depression, you don't. And your friend, spouse or relative knows it. It's not a bad thing; since understanding depression means having it. I'd rather that no one, anywhere, understood it. The point here is to be honest with your friend or relative and don't profess things that aren't so. Sincerity will help him or her a great deal; it will engender trust, which every depression patient has a problem with, at one time or another.


Relevant Links

Depression caused by Chronic Illness

Depression is one of the most common complications of chronic illness. It is estimated that up to one-third of individuals with a serious medical condition experience symptoms of depression. Depression and illness may occur together because the physical changes associated with the illness trigger the depression or the individual has a psychological reaction to the hardships posed by the illness. The illness may affect a person's mobility and independence, and change the way a person lives, sees him or herself, and/or relates to others. For these reasons, a certain amount of despair and sadness is normal. In some cases, a chronic illness may actually cause depression . Read more in original article at Medicine.Net...


Depression and Chronic Pain

Depressed patients have three times the average risk of developing chronic pain (and visa versa). This is because depression and pain share the same brain pathways, as explained by the Harvard Health Publications website:

"The convergence of depression and pain is reflected in the circuitry of the nervous system. In the experience of pain, communication between body and brain goes both ways. Normally, the brain diverts signals of physical discomfort so that we can concentrate on the external world. When this shutoff mechanism is impaired, physical sensations, including pain, are more likely to become the center of attention. Brain pathways that handle the reception of pain signals, including the seat of emotions in the limbic region, use some of the same neurotransmitters involved in the regulation of mood, especially serotonin and norepinephrine. When regulation fails, pain is intensified along with sadness, hopelessness, and anxiety. And chronic pain, like chronic depression, can alter the functioning of the nervous system and perpetuate itself."

 4 Tips to help with Chronic Pain and Depression from the Spine Health website


Depression in people with Medically Unexplained Physical Symptoms

"Patients with medically unexplained physical symptoms have been shown repeatedly to have increased rates of depression and anxiety" (click for source)

I would argue that regardless of the nature of the patients symptoms, their experience of 'medically unexplained physical symptoms' lends itself towards depression. Add to the experience of not having a 'named condition' that sounds or feels legitimate, the difficulty these patients have in accessing the information, support, and treatment they need. I believe it is important to recognise that this is the context of the persons illness experience and that alone can toll on a persons physical and emotional health. Read more on my blog post: The Experience of Unexplained Illness here...


Other Posts in this Series:

• Being Supportive (the secret of)
• The dangers of wanting to fix it
• Don't jump to the rescue, practice being self aware

No.1 reason to always use the same pharmacy

If you are a returning customer, the pharmacy can save you from that dreaded scenario where you have run out of medication and you haven't put your repeat prescription in at the surgery in time. Forgetting your medication can be an inconvenience, or it can lead to a flat panic. If you always use the same pharmacy, help is at hand.

The pharmacy computer will store information about what you are taking, how much, and the dates when they processed a prescription for you. This means that if you run out of medication the staff can see that were due to run out and they will give you enough medication to last you the one or two days you need before the prescription from the surgery gets processed and you can pick up the rest.

This is my experience from using Superdrug pharmacies and after relying upon this system - on numerous occasions - when my partner has run out of pain-relief medication, I have today used the service myself. Consequently, I am feeling very pleased with myself for 'staying loyal'. It really pays off!

More tips to reduce the stress surrounding repeat medication.

To avoid unnecessary visits to the surgery:

• Most surgeries let you renew your prescription on-line via their website or in an email. This is excellent because you get to keep a record, and if you get confused you can check when you last placed a renewal and what it was for.
• Ask your GP surgery to send your repeat prescription directly to a pharmacy of your choice. (The pharmacy sends someone to the surgery every day to pick up them up).
• If your health is preventing you from getting to the surgery/pharmacy you can ask friends and relatives to drop-off and pick-up repeats on your behalf.
• Don't be afraid to telephone the pharmacy in advance to check whether your medication is ready to be picked up!

To find out more information about your medication:

• Don't be afraid to ask your pharmacist. Pharmacists specialise in medication. They know about side-effects, they know how different medications will interact if taken at the same time, and they have to keep up to date. You can have a quiet word over the counter - or you can even telephone from home and ask to speak to the pharmacist who will be able to give you clear, straight-forward information.

Pain as a Primary Condition not a Symptom

It is no longer appropriate or useful to put chronic pain conditions under the Medically Unexplained Physical Symptoms (MUPS) umbrella according to Neil Berry, Consultant Psychologist. In his article “Managing Medically Unexplained Symptoms: Moving beyond Somatisation” Dr Berry says:

“there is now a considerable body of research indicating that chronic pain states are the result of complex sensitisation processes within the sensory nervous system.”

Consequently, Dr Berry argues that MUPS no longer applies to non-specific low back pain, musculoskeletal pains, post-whiplash syndromes, chronic abdominal and pelvis pains, atypical facial pains, non-cardiac chest pains, and fibromyalgia — presumably because the added sensitivity of the nervous system does explain the patient's painful symptoms.

Dr Berry’s article explains that when pain becomes a long-term affliction, pain is no longer viewed as a symptom but as the primary condition to be treated and managed. Pain itself is the “diagnosic passport” which which a patient can access services. If you suffer from permanent pain, your condition may be given the label Chronic Persistent Pain Syndrome.

On the letters page in the most recent issue of Private Eye (issue 1301) Dr G.R. Harrison wrote a correction about the nature of Fibromyalgia (FMS) and I think his description is the best description of chronic pain conditions, so far:

"The disorder (FMS) is due to abnormal central nervous system processing of sensory inputs, producing what many people now describe as a "pain amplification" condition. Therefore people with FMS will feel pain at a much lesser level of sensory stimulation than normal people, hence its association with Irritable Bowel Syndrome, Irritable Blabber Syndrome, Non-Carcinogentic chest pain, etc." 

If you are diagnosed with a chronic pain condition you can reasonably expect to be referred to a multidisciplinary pain management clinic.

What are Functional Symptoms?

Doctors who recognise that “Medically Unexplained Physical Symptoms” is an unhelpful description often favour the term “functional” symptoms, which from a lay man’s point of view isn’t much better at indicating the presence of persistent, genuine suffering.

What do doctors mean by Functional Symptoms?

Professor David Peters from the New Medicine Group says that “what's been discovered in cases of chronic conditions or “long term low-wellbeing”, is that the body isn’t functioning as it ought to. For example, when people have a persistent pain syndrome, even though the brain isn't damaged, it reacts differently. In IBS the gut responds differently to stress; in CFS the muscles react differently to exertion. In all cases the organs are intact and undamaged, but they are aren’t functioning normally.” This change in the way the body is functioning explains the experience of ill health.

In the case of Functional Symptoms in Neurology:

According to Dr Jon Stone, Consultant Neurologist (Edinbrough), of neurosymptoms.org “functional implies in the broadest possible sense a problem (of the nervous system) due to a change in function of the nervous system”. He says that Functional Symptoms account for around 1/3 of all patients seen in hospital medical clinics.

According to Dr Stone: “Patients with functional symptoms are, on the criteria of distress, disability, and persistence of symptoms, as deserving as patients with a pathologically defined disease.” Dr Stone seems to be aware that these patients are not always treated with the same compassion or care.

I say this, because he opens his paper “Functional Symptoms in Neurology” with a direct warning to fellow neurologists — a warning that no patient or layman would ever get away with! He says “If you find people with ‘neurological symptoms but no disease’ tiresome and not really what you came in to the speciality for, then you are going to find larger parts of your job tiresome - and worse - you attitude will filter through in a negative way to the patients regardless of the form of words you use to talk to them.” At last! A neurologist who understands! He has even built a website to explain to patients, their friends, and family, how neurological symptoms without disease can be understood. Be sure to check out the section “All in the mind?” (The answer is no, it’s not). Go to: www.neurosymptoms.org

Well-known Functional Symptoms

Since functional symptoms often come in patterns - called syndromes - they are widely recognised and have been given names. “So people with unexplained bloating, irregular bowel habit and abdominal pain are told they have Irritable Bowel Syndrome (IBS); people with aching muscles in many parts of the body are said to be suffering from Fibromyalgia Syndrome (FMS); people with prolonged exhaustion are diagnosed as having Chronic Fatigue Syndrome (CFS)”. (Source: NMG)

All these syndromes have much in common with Migraines: the experience of a migraine can debilitating, but tests and scans will not show up any evidence of the pain and discomfort the patient is suffering. A diagnosis is reached through talking to the patient, and being able to acknowledge to the patient: “Yes, I recognise these symptoms.”

Despite these similarities; despite the absence of any known cause for migraine, you will be aware that migraine is more widely accepted as a ‘real’ health complaint. I propose that migraine is easier for people to understand because you can reasonably accept the migraine sufferer to say, at some point, “I feel better now.” In this way, a migraine is less disturbing, and fits our ideas of what ill-health looks like: a migraine has a clear beginning, middle, and end.

The Experience of Undiagnosed Illness

In 2007 I came across a research paper “Living with Undiagnosed Illness: an exploratory study” by Dr Sarah Nettleton of York University, and an article in a peer reviewed academic journal - Nettleton, S. (2006) ‘I just want permission to be ill’: Towards a sociology of medically unexplained symptoms Social Science and Medicine 62 (5) 1167-78


I felt such relief at having a person of authority acknowledging the experience undiagnosed patients, so I think there may be value in sharing my discovery.


The research paper was based on 18 interviews with neurology outpatients who varied in terms of their age, gender, and the severity and duration of their undiagnosed illness. Dr Nettleton’s research identified seven themes that characterise the experience of people living without a diagnosis.


1. Uncertainty

• “No diagnosis, no prognosis” said one of Sarah’s interviewees. Patients have no idea of how their symptoms might progress: temporary or permanent? can they be treated? will they get worse?
• People with unexplained illness can have no idea how their symptoms should be managed.
• Planning day-to-day is virtually impossible (symptoms are unpredictable, and can vary hour-to-hour, day-to-day, month-to-month). Planning holidays, housing, and financial issues are especially difficult.

2. Lack of Support

• “Uncertainty is compounded by lack of information and ongoing support” (Source: Nettleton)
• Patients with unexplained illness have no access to leaflets, support groups, treatments, or advice, resulting in feelings of isolation, desperation, and feeling there is no where to turn to for help.
• Securing on-going support is usually more important to this patient group than a disease label.

3. Social/Family Relationships

• Asking for help can become difficult for anyone who feels like they are a burden already.
• The ‘centrality of the body’ in social interaction and the lack of clarity and prognosis for unexplained symptoms makes sustaining relationships, at the very least, a challenge.

4. Relationships with doctors
To address this theme in my own words:

• Doctors become the primary source of information, because without a diagnosis there is no way of accessing leaflets and other secondary sources.
• The attitude and manner of doctors is important because the doctors need to be able to reassure the patients that their symptoms are legitimate and genuine. This acknowledgement is of utmost importance to a person with unexplained symptoms.

5. Lack of credibility and legitimacy

• “Not having a legitimate diagnosis also limits legitimate access to the ‘sick role’ with all the associated rights and privileges.” (Source: Nettleton)
• “Social norms dictate that we should make efforts to get well… within this context, it is not surprising that advice from “well-meaning” friends and relatives could be a source of frustration.” People with “unexplained” illness know that if they are “not seen by others to be working at getting better, there is a risk that other people will think they are malingering.” (Source: Nettleton)
• The use of sophisticated technology and tests to locate disease in the body creates the belief that the ‘experience of illness’ is less legitimate than disease or damage that you can locate in the body with imaging technology, etc.

6. Influence on the ‘self’ and social identity

• “Although on one level the patients recognised the authenticity of their symptoms, they also found that the lack of clinical information made them question themselves”. (Source: Nettleton)
• “All the participants reported how, at some point, they had asked themselves questions such as: ‘Am I imagining it?’ ‘Am I just being lazy?’ ‘Is it something I have manifested?’" (Source: Nettleton)

7. Searching for explanations
To put it in my own words:

• Although some people can accept that they won’t get a diagnosis, it's still important to them that they can ‘make sense of’ their symptoms in some way. They need to be able to explain their symptoms to themselves, but also to friends, family, and official bodies: without an explanation some people find it difficult to access support/understanding, and others find it virtually impossible.

Patients who have not been diagnosed and continue to experience symptoms that effect their sense of wellbeing and quality of life for years, even decades, are often told that they are experiencing "Medically Unexplained Symptoms" or "Medically Unexplained Physical Symptoms". This is an umbrella term that covers a variety of conditions. Because it is vague and makes a point of saying very little, it provides little reassurance to the undiagnosed patients, and can exacerbate their fear that doctors regard their symptoms to be 'in the mind' rather than firmly rooted in medical legitimacy. 

Despite it's failings, and my reservations about its usage, the term "Medically Unexplained Symptoms" it does allow us to group these patients together, regardless of their symptom-type, and start a discussion about the impact of having an undiagnosed 'unexplained' illness, in a society that still believes, in the most part, that western medicine has all the answers. 

More in this topic:

An Introduction to Medically Unexplained Illness