Tag Archives: physical health

What’s in a label?

Some say labels are just for cans and boxes but why do people search for years for a label for their illness or disability? Why does it feel so important?

When a diagnosis is finally reached, there seems to be a sense of relief, maybe even satisfaction! Almost “I told you so!” Sadly, before this point, people worry others think they’re faking or exaggerating their symptoms. Without a diagnosis you’re just a list of problems. Before a diagnosis, phrases like “it’s all in your head” are used and the patient feels like no one believes them. Doctor after doctor has said “hum, I’m not sure; you say you feel like this, but the tests say you don’t.”

Finally, the label means validation.

Fibromyalgia is one of those illnesses that takes years to diagnose and people feel they’re not being believed, they’re pushed from pillar to post as their symptoms get worse.

The way I was given the diagnosis of fibromyalgia couldn’t have been further from what I was hoping. It’s meant to be a diagnosis of exclusion. Ideally, you would hear “We’ve done all the tests to rule out these illnesses x,y,z… and they’ve all come back clear, this is good news. (Pause.) This means, we’ve come to the conclusion, it’s fibromyalgia. It’s good, we now know what it is because we can begin to manage it. The way your symptoms are presenting (because they present differently for each individual) we’re suggesting these treatment options…”

In my experience, there are illnesses they haven’t excluded, numerous tests they haven’t done. And the news was delivered, while prodding the joints in my hand (for no reason I could understand) “Well (sigh) it could be fibromyalgia”. That’s it, we have nothing to offer. “We might have a leaflet in the waiting room you could pick up on your way out…” they’d run out of leaflets…

Oh well, ignore how I got the label, what mattered was, I had it.

Fortunately, once I had the label, I was then able to find treatment options myself; I found a clinic in London (who only see people with a diagnosis) to get some advice; I had some group session with a physio and an OT and feel I can pro-actively manage the illness myself.

Reactive vs pro-active management

Understanding without a label

“But as long as we understand the difficulties, we just need to make sure individuals get the support they need.” Said a well-meaning nurse to me recently.

Understanding difficulties someone has and the support they need takes time and effort most people are unwilling to give. Understanding what an individual really needs takes knowledge, skills, expertise and often wisdom that most people just don’t have.

Why a label matters

With a diagnosis you get treatment options – before the point of diagnosis you’re crawling down a corridor of shut doors. At the point of diagnosis, a door finally opens. You’re finally allowed to enter the world of your given disorder and explore the “options”. All you’ve every wanted are “options”, that magical word! There may not be many, but before now, there haven’t been any!

Un-diagnosis can be lonely, with a diagnosis you can often find a community of people facing similar struggles, the support can be there if you want it. In this digital age we have forums of people literally at our fingertips. Just type your diagnosis in Google and there’ll be a Facebook group if nothing else! Sometimes giving support can be just a therapeutic as receiving it.

The mental health community is full of people who say “I don’t have a diagnosis but can I join…?” Of course, you don’t need a label to join but most people find it helpful to know for sure which label fits.

Sometimes the label changes

Sometimes clinicians get diagnosis wrong. Sometimes illnesses change. Sometimes diagnostic tests change or medicine gets smarter. For one patient this could be a traumatic and confusing process, for another it might be liberating.

Without a diagnosis, you may feel like a list of unknowns, more questions than answers. Why do I feel like this? Why do the tests show this? Who am I? What am I? Why is this? Things that don’t make sense and things that don’t add up. With a diagnosis there may still be lots of questions but some of them may start to have answers.

Your illness, disorder or disability doesn’t have to define you, that’s a choice, but a diagnostic label simple helps things make sense.

Broken trust

Trusting medical professionals

In a recent blog I concluded that I was going to try some new medication with the support of my GP – sounds sensible and simple doesn’t it?!

Unfortunately, my relationships with medical professionals isn’t straight forward!

I’ve had mental health problems for over 20 years and my physical body has been letting me down lately too:

  • The first time I went to my GP (admittedly this was in the 90s) I wasn’t referred for the support I needed.
  • The psychiatrist I was under for my first hospital admission (2005) mis-managed my case so badly I nearly died.
  • Bed bound in hospital with a fractured spine I contracted MRSA (to be clear, I could not get up and about to go and find MRSA for myself, I was given MRSA).
  • Ambulance outside A&E departmentDiscriminatory treatment in A&E following self harm. Eg longer waiting times and derogatory comments. (Some may think I deserved this and I agreed at the time but self harm is a symptom of mental illness just like hypoglycaemia is a symptom of diabetes.)
  • During a subsequent hospital admission, I built a good relationships with a therapist but they stopped seeing me with no explanation.
  • When I’ve tried to raise concerns about my care, my version of events has been discounted.
  • Abnormal blood results have been missed. Only picked up 10 months later, when I was seeing the GP about something else. I was still really struggling with the problem from 10 months previous but why would you go back when you’d be told there was nothing wrong?
  • I came out of a consultation with a psychiatrist, having told him I was actively suicidal, with no plan to keep me safe. As far as he was concerned I was going to go home and take an overdose (of enough medication to end my life).
  • For years I was told my tiredness was due to me not eating enough. When they finally did some blood tests, they found I had an underactive thyroid.
  • During a phone consultation with my GP I was incredibly distressed (crying so much I could hardly talk) and the doctor made no reference to it. I tend to hide my distress very well, the fact I couldn’t was an alarming sign I was very unwell.
  • 3 incredibly painful cervical screening tests (I was told it was normal because I was difficult) when I’ve since discovered, if they used a small speculum it can be completely pain free (twice!)!
  • My GP “reviews” my repeat prescription without seeing me (for medications that require annual blood tests…).
  • Following an ankle operation my physiotherapist insisted the exercises that caused severe pain should be performed multiple times daily. I trusted her advice. Turns out, when I went back to see my surgeon, the operation I’d had, the no-pain-no-gain approach was not appropriate and I’d done more harm than good. (I’d been the one doing the exercises so it was my fault.)
  • After experiencing blunt-force trauma to my jaw with immediate swelling and extreme pain I was told I did not have a fracture and did not need an x-ray. 2 weeks later, an x-ray revealed a fracture needing urgent surgery.
  • I recently told my GP I’d lost a lot of weight. She checked if there was an explanation. Having fractured my jaw, we ruled out the “unexplained” (possibly cancer) but she showed no concern about the fact I have a history of a serious eating disorder and may be finding the situation problematic.

Don’t get me wrong, as a qualified doctor, I’m well aware of how hard it is behind the scenes. I don’t expect all medical professionals to be perfect, everyone makes mistakes but there many other examples; I’ve been let down time after time.

The definition of trust is: “Firm belief in the reliability, truth, or ability of someone or something.”. The 4 elementals of trust are believed to be: competence, integrity, reliability and communication. It saddens me that at times all of these elements have been missing from my care leading to serious consequences (at worst, near death, at best, seriously prolonged illness).

When we trust someone we are willing to be vulnerable with them. We have no choice but to be vulnerable with medical professionals; at best we’re talking about personal issues, at worst we’re under anaesthetic! I’ve recently discovered, when on the emergency surgery list, you might never meet the person who did your surgery!

I was asked to trust someone I had never met – when we did meet, unexpectedly, in clinic 5 weeks later, he said “hmm, I recognise those arch bars… did I put those in?! Oh, I was asked to come in and help… very nice to meet you!” Turns out, the top and bottom of my jaw had been operated on by 2 different surgeons! Now, this guy was absolutely lovely and the reason I didn’t meet him before my surgery was because there was no time; he was operating while I was being put to sleep. I came out of surgery at 10.30pm and went straight to sleep on the ward and for all I know he continued operating! In clinic he then introduced himself as if building up the rapport that leads to a trusting relationship, I cannot fault this interaction one bit!

Something I find particular difficult is that when we walk into the consulting room, even with someone we’ve never met before, trust is assumed; whereas in most walks of life, trust has to be earned. Does a medical professional assume that since they’ve earned their qualifications they’ve also earned our trust? I realise I may be an extreme case but it never seems to occur to the medics I see, that I might carry baggage. If I struggle to trust, surely other people do too but it literally never occurs to them that they might need to check if I need more reassurance or explanation.

If I was still practicing medicine, I’d like to think I would have more compassion for my patients and some understanding that I could not assume their trust.

At times when I’ve been considered a vulnerable adult (when sectioned under the Mental Health Act), I’ve been in a position where my inability to speak up for myself has been taken advantage of – this is simply not ok. At times, seeing a medical professional has put me in a worse position than if I’d simply not gone to see them.

Please don’t think I’m saying we shouldn’t trust medical professionals!

I’ve had numerous fantastic experiences (I’ve definitely had my monies worth out of the NHS):

  • Multiple occasions when psychiatrists have pulled strings for me to be admitted out of area (because I don’t want to be admitted where I work).
  • Surgeons who’ve preserved my ability to walk and to see without judgment.
  • Incredibly compassionate treatment in A&E following self harm (it’s probably been 50/50).
  • HydrotherapyHydrotherapy – just wow!
  • A psychotherapist who quite literally saved my life.
  • Paramedics who’ve saved my life.
  • Hampshire CCG agreed to continue funding a Berkshire psychotherapist when I moved house.
  • Multiple intimate procedures/surgeries done with ease, dignity and compassion.
  • Multiple 2 week wait procedures.
  • Once my jaw was diagnosed (on mainland England!) I received excellent treatment! Including my consultant booking to see me on a non-clinic day to check my progress! I highly recommend Guildford Macsfax department!

Unfortunately, I’ve just had a few too many bad experiences and it’s human nature to protect ourselves from future bad experiences! I consider myself incredibly fortunate that, with my medical background and interest in the medical sector, I have knowledge that means I can manage ongoing treatments myself but should I have to?! I have to rely on the GP for monthly prescriptions but I realised, recently, I really ought to go and see them when I realised what was written on my prescription really didn’t bare much resemblance to the dosages I was actually taking! (All safe – I do know what I’m doing – not something I recommend for anyone not medically trained!)

I avoid going to see medical professionals if at all possible (generally a good rule of thumb for most people!) but this means I often put up with far symptoms for longer than is advisable! Ideally I’d be assertive and insist that they listen to what I need but feeling vulnerable strips me of the minimal assertive capabilities I have!

When it comes to it I just have to believe that the majority of professionals have my best interests at heart. Just because I’ve met a few people on their off day (giving them the benefit of the doubt) doesn’t mean the next one won’t be completely awesome!

Weighing up the benefits

I’ve written previously that, although recovered from anorexia, I continue to struggle with body image and thoughts about my weight etc. I currently have a very difficult decision to make that brings up an important issue frequently faced by people with chronic illness.

Balancing benefits with side effects of medication.

I’ve been on many psychiatric medications in my time, some more beneficial than others. Each time I’ve been up against the decision to try something new, I have point blank refused to take medication with a common side effect of weight gain. A lot of psychiatric medications have a side effect profile that impacts the gut/brain axis, nausea, diarrhea or constipation are very common. Many psychiatric medication increase appetite, which in turn leads to weight gain. Some medications appear to have a near 100% incidence of weight gain as a side effects and I know this would have an incredibly negative impact on my mood and overall mental wellbeing.

I’m currently very mentally well. However, it’s my physical health that’s letting me down! Due to degeneration in my spine I get a lot of pain in my neck, back, across my shoulders and down my arms. This pain, at times, is near unbearable – I say “near unbearable” because, I can bear it, I do bear it, every single day, I get up, get dressed, go to work and most people wouldn’t know I’m in any pain at all.

Painful spine

When I was last seen in the pain clinic (in May) I was advised to try new medication and I was put on the waiting list for anesthetic and steroid injections. I hoped the injections would provide a longer term solution that would mean I wouldn’t have to rely on daily tablets so I decided to hold off making decisions about new mediations. Unfortunately, other than making me feel as though I’d been run over by a sewing machine, the 24 injections I had in my neck and back had no impact! While I await further advice about further intrusive management, I feel I have no option but to review my medication regime.

Medication in hand

The fact that I do bear my pain, doesn’t mean it’s easy – it feels, at times, as though I’m on the edge of coping. What I’d love to do on the majority of days is stay in bed, close my eyes and sleep the pain away; but one of the cruelest things about chronic pain is that it stops you sleeping! Just when your body could do with the time to rest and repair I get a mixture of gnawing/gripping, stabbing (as though I’m actually being stabbed) and electric shocks of pain across my back and down my arms. The best thing I do each day is just get on with my life and keep distracted!

The problem I have with weight gain is difficult to put into words, except to say, it would feel as unbearable as the physical pain I feel in my back and shoulders.

For the neuropathic pain I experience (caused by bone spurs pressing on nerves), a group of drugs called gabapentinoids is recommended.

I’ve read studies quoting between 10-80% people taking gabapentin experience weight gain. This is via a variety of mechanisms: decreased metabolic rate, water retention, increased appetite and decreased motivation to exercise being the major causes. Even in the worst case (a study looking at high dose gabapentin for epilepsy), there’s still a 20% I will not experience weight gain but this may require high levels of self-discipline not to eat more than my metabolism requires and to maintain my exercise regime. But I cannot hold onto this as a guarantee, the maths isn’t on my side!

Maybe I can use this as an opportunity to value my quality of life over what I think about my body? Maybe I can use this as an opportunity to stop valuing myself based on the number on the scale? I know this would be the ideal but it’s not as though I can flick and switch!

Stepping on bathroom scale with tape measure

The struggle is that, the gabapentinoid may not even decrease my pain! I may agonise over this decision, try the medication and it have no or little impact! Worse still, I may experience side effects without any benefit!

People with chronic illness are often faced with decisions such as these. Do the benefits of the treatment outweigh the costs? Common side effects that need to be considered include: drowsiness, headaches, weakness, insomnia, constipation or diarrhea.

Symptoms of chronic illness are usually fairly complex and the question of balancing side effects generally isn’t straight forward. For me, the question is:

“Is my back pain bad enough to risk sides effects that may cause a different type of pain and impact my mental health?” Or can I keep going with the status quo? As much of a struggle as it is, I know where I stand.

Trying to manage symptoms of irritable bowel syndrome can involves multiple medication. One may reduce severe pain and bloating, meaning it’s possible to get out of bed and function but the side effects of urgency (when you need to go you need to go) may be incredibly inconvenient. Of course, one symptom of IBS can be urgency so is it possible to know the drug is causing the symptom?

Painful bowel symptoms

Taking a medication for chronic migraines may mean the sufferer is no longer confined to a quiet darkened room for 1-3 days twice a week but are the side effects of drowsiness and poor concentration 24/7 an appropriate pay off?

Weighing up the benefits against the side effects can be a laborious process that involves a lot of trial and error. The process is often complicated by the side effects being similar to the symptoms of the illness! Just because you experience something new, doesn’t automatically mean the medication is producing the symptom or that the medication isn’t working! There are horror stories of (for example) psychiatric medications causing suicidal ideation but instead of fearing the sensationalistic and inflammatory headlines, what we need to remember is that close monitoring by medication professionals is important when introducing new medications.

Please don’t be put off trying new medications. Of course we need to consider the side effects but even common side effects usual only affect 1 in 10 people.

I’m going to try the new medications and my GP is going to help with close monitoring of the impact, I’ll keep you posted!