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Chronic Illness

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In Chronic Illness

How to get the best out of medical appointments…

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I am participating in this month’s Patients for a Moment blog carnival!  This month’s carnival is being hosted by Abigail at Hidden Courage.

The Patients for a Moment blog carnival is held every month and solicits submissions from bloggers regarding a topic related to illness, whether it be from the perspective of a patient, carer or a professional – the carnival is open to everyone.

This month’s theme is: getting the attention you need.  Specifically, getting the attention you need as patients within the healthcare system.   I am sure every patient, has been casually dismissed by a busy, overworked doctor, with a glance at their watch, counting down the time when we should be out, and time to see the next patient.

It seems as if doctors are constantly watching the time
It seems as if doctors are constantly watching the time

However, what is it like to be a patient with a long-term chronic illness, where it seems that we are constantly being dismissed by the healthcare system.  And what can we do to get the attention that those with chronic illnesses need and deserve despite often having difficult and challenging conditions which are not always easy to diagnose nonetheless treat.

As a patient with a long-term chronic illness; an illness which went undiagnosed for years, and one which was misdiagnosed as an anxiety disorder, I have at times felt ignored or dismissed by the healthcare system on countless occasions.  When I tried to challenge the doctors that the dizziness started before the anxiety, however, I was dismissed yet again, probably deemed to be a hypochondriac  and again sent on my way.

Being ignored and dismissed by doctors, and being constantly told that the symptoms you are experiencing are just ‘all in your head’ can be demoralising; especially when the symptoms that are supposedly in your head are for you, very very real.  A problem that I often experience is the lack of consistently in my care from the medical profession.  The surgery that I am registered with has several different doctors, and you are never guaranteed to an appointment with the same doctor.  This is a real disadvantage for patients with an unusual chronic illnesses as it means that you have to reiterate your medical history, diagnosis and so on at every appointment.   Also different doctors have different methods of working and ideas, therefore patients with chronic illness often prefer to see the same doctor for consistency in their care and to see a doctor that know their full medical history and familiar with their diagnoses.

So, whenever I make an appointment with my local GP Surgery, I makes sure that I ask to see my regular doctor – doing this also saves me and the doctor time as I don’t have to waste several minutes of the appointment explaining my medical history.

In the end I had to fight very hard to even get a referral to see a neurologist.  I was lucky that I had a strong support system in the form of my parents, and found it incredibly useful to have an advocate present during the appointment to stand up for me when I didn’t have the confidence to stand up for myself.

Another barrier that I have found is the routine questions that doctors often ask, such as asking to describe what the dizziness is like; however how am I expected to describe an experience that is so difficult to explain in words – especially when put on the spot.  Often I have found that there are so many ways to describe certain symptoms, and I cannot always find the right word to describe the experience of the dizziness, or trembling in my legs.  If patients are inconsistent in their account, doctors are then more likely to dismiss them and not take them seriously.

In order to avoid this barrier, and to ensure that I adequately describe the symptoms accurately and consistently I write my experiences with my illness (both physical and psychological symptoms), in a journal and then take it with me to appointments.  A second notebook is also very handy to take along to appointments in order to write down notes regarding the information and advice that the doctor passes along to you, especially helpful if you are likely to forget after the appointment has ended.  Not only is it helpful to make notes it also shows the doctor that you are a patient whom is pro-active in their approach to their own health, and also are a cooperative one.

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Keep track of your illness by journaling! And takes notes during appointments to get the most out of it…

So to reiterate; in order to be taken seriously by the medical community and not to be dismissed by doctors here are my tips on how to get the best out of appointments:

  • Do not be afraid to advocate for yourself to get what you need in terms of referral, treatment and so on.  If you are unable to do so for whatever reason then perhaps take someone along to appointments so they can advocate on your behalf
  • Try and get appointments with the same doctor to get consistency of care and prevents you from having to divulge your entire medical history at every appointment
  • If you can, try keeping a journal or even a small notebook where you can keep account of your medical condition, such as symptoms – the frequency, severity and whether certain treatment or approaches seem to have any impact on them
  • To show that you are a cooperative and pro-active patient, take notes and ask open-ended questions at appointments which will less likely result in you being dismissed by doctors and other medical professionals
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In Chronic Illness

Don’t judge others for you do not know their story…

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On Wednesday at the ‘Life 4 Living‘ group that I attend, we had a very interesting seminar on Diversity.  In the seminar we were split into two groups and given a laminated sheet with a picture of an island, and a deck of cards with pictures of a diverse group of people, with only their occupation listed on the cards.  We were then told that a ship carrying the people on the cards was in an accident, which resulted in the ship sinking and the people being stranded in the middle of the ocean.  Each group had a lifeboat – however, on the lifeboat there were only spaces for 10 people, and hence we had to decide who of those people to save and whom to leave in the water.

This was obviously very difficult as the only basis we had to make our decisions is what they looked like and their occupations.  During our discussions we decided to save a doctor and nurse, to treat those with medical injuries, a carpenter to help build shelter from the bad weather, and gardener’s to help grow crops and nutrients whilst being stuck on the deserted island.

However, we soon learnt that the doctor who we chose to rescue was in fact a doctor of music and not a medical doctor.  And the nurse, was a veterinarian and so would not be very useful in treating human patients!  And the people whom we rejected, for example, the biker as we thought he looked like he would cause trouble, would in fact be extremely useful in an emergency situation as he was a surgeon.

This exercise, however, taught us how we often make judgements based on very little information causing us to make snap decisions on the type of person we are busy scrutinising.  We are too busy scrutinising others; determining the type of person we believe them to be instead of seeking out the person’s story.

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Many of you spoonies reading this will surely understand this; particularly those with invisible illnesses as we are often victim of others’ judgements.  For example, once I went out, and forgot my crutch.  Due to the problems with my balance, I was all over the place, and as a result, a woman came up to me and accused me of being drunk.  I have heard many other stories, of spoonies whom have been victims of incorrect assumptions made by others – people who have been accused of misusing a disability badge, because there were no outward signs of illness or disability, and thus were labelled as being healthy, and in no need of using a disability parking bay.  There are endless examples of these types of anecdotes that have been shared by spoonies everywhere.  I am sure everyone reading can think of at least one example from their personal experience.  Please feel free to share your experiences in the comment section below.

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So, the game that we played at Life 4 Living, and through the experience of living with an invisible illness, has taught me to not make assumptions about people, without getting to know them first.  To not assume that a person has no wounds, or illness because there are no scars; no signs of illness or disability as not all wounds, illnesses or disabilities are visible, many are hidden as if keeping a secret from the outside world.  And as the quote above also tells us, we also shouldn’t judge so quickly or harshly as we may find ourselves walking in that person’s shoes.

Perhaps if we weren’t so quick to judge in the exercise at Life 4 Living then we may have chosen the people that would have been useful whilst being deserted on that island, instead of those we chose based on our preconceived ideas regarding their abilities and resources that they would bring.

 

This is a lesson that we all must learn….

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Getting through the tough times with chronic illness…

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What gets you through the tough times with illness?  What are you go-to things when going through a flare, or your symptoms have deteriorated?

As many of you already know; some of my symptoms such as the dizziness and trembling in the legs have become worse.  These symptoms have not just affected me physically, but also has affected me psychologically.  Especially, as I have missed opportunities such as going to Life 4 Living, and even the trips out with my personal assistant have been cut short as I have felt so bad.  This has then made me feel down; negatively affecting my mood, leaving me to feel even worse – and the cycle continues.

Yesterday, however, although I felt unwell and the dizziness was bad, a friend invited me out for a meal; encouraged me to get out of the house and promised to cheer me up. I actually spent the day in my pyjamas, curled up with a blanket, and watched television and films.  The dizziness was so intense that the last thing I wanted to do was to leave the house; leave my safe cocoon from the world.  But I am so glad I did, as I had a fantastic time!

We went to our regular place for a meal; a place which to me is safe and familiar.  And as we chatted about what was happening in our lives, and laughing over funny little anecdotes that we were sharing, my mind was taking off the dizziness, even though my world was still off-balance and moving.  And for the first time, I felt content and happy despite the dizziness, trembling in the legs and the pain.

Sure, I was tired after arriving home, but I felt happy, and had great memories of a night out with a fantastic friend.  Spending time with friends and having a good time seems to be a great distraction from daily life with chronic illness and something that I need to see me through the tough times when dealing with the daily symptoms that the condition causes.

I couldn’t do it every night, clearly, and when I can barely walk or stand then my favourite DVD’s and my iPad and television will have to be enough to see me through the tough days with chronic illness.

What do you need when you are suffering badly with particular symptoms?  Is there anything which distracts you from fatigue, pain or depression?  Please share by commenting below!

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The Struggles Continue….

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Time for a brand new post; I know I have not written a post in a while, and for that I apologise.  The truth is that for some time now I have been struggling with my condition, and in particular the dizziness which I live.  For whatever reason. the constant dizziness has become much more severe.  I do not know whether the severe dizziness that I have been experiencing is a relapse, as the severe dizziness has happened before, or whether the dizziness is simply getting worse.

 

My reality
My reality

 

I have not been able to talk to many people regarding the sudden deterioration in symptoms; I often find it hard to talk about – when I try I just end up crying and in bits afterwards.  Perhaps I find it more difficult to talk to others, such as my family and friends as I do not want to worry them.  On top of this also, is the deterioration with the trouble with my legs; both the weakness and trembling in them have become worse.  The severe trembling and dizziness, however has recently made it very difficult when out; at both the social groups that I attend as well as the days out with my personal assistant.  These symptoms are so troublesome that the places and activities that were so easy for me, has now become much more difficult.  Yesterday, I had difficulty in getting back to the car which was parked further away from the garden centre then we usually park – it was not that much further, but because of the severe trembling in the legs, I almost didn’t make back to the car in one piece.

The wheelchair that I have is obviously a solution when my legs become so severe that they hold me back from doing what I want; but alas the dizziness makes it difficult for me to be able to stay in the chair, as I feel so dizzy even when sitting down.  What am I to do?  A lot of you reading this, may think that I am weird and not able to understand this quandary, heck even I don’t understand it – but unfortunately this is my reality; one in which I face everyday.

Everyone I know keeps suggesting that I go back to the doctors. People constantly ask me to describe the condition and what I go through everyday with it.

But how am I expected to describe something which I do not understand myself?  Even the doctors are unable to understand my condition and its symptoms recently the doctor who has been dealing with my condition and has left the practice that I am registered with and so as a result have had to find a new doctor to deal with. Whenever I do go and see the doctor, however, and report in the deterioration and severity in my symptoms I am often met with puzzlement – which obviously doesn’t inspire much confidence!

Recently, my parents booked the cruise that we have been looking at for a while, and although I am excited and very much looking forward to the holiday, this sudden deterioration in symptoms does make me worry slightly about how I will feel next year.  Will the severe dizziness still afflict me?  Will the dizziness withstand a cruise?   Only going on the cruise will i be able to determine this.  But looking at the silver lining at least it will be an experience I will never forget, and it is these memories that are priceless…

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