Getting a diagnosis of physical illness with a history of mental illness

by Liz Lockhart

The difficulty of getting a physical health diagnosis with a mental health history

From the emails which I have received from site visitors, I know that some of you will have noticed that my news reports have been infrequent recently.  This blog is to explain why and to let you know that I really miss the contact that I have with our readers and look forward to being back to work again as soon as possible.

I collapsed in December and was taken to hospital.  They found that my blood pressure was very high and put it down to that.  I know that the collapse scared the life out of me and my old anxiety problem kicked in which caused me to have the mother of all panic attacks and it was that that sent my blood pressure through the roof for which I was prescribed medication.  When I next saw the doctor he told me that there was nothing wrong with me except for ‘mental health’ problems and insisted that I start taking antidepressants.  Although I have had an anxiety disorder in the past I have never suffered from depression in my life although this episode of ill health has left me pretty low in my mood.

I explained that I was having dreadful headaches and blurred vision which were concerning me but he insisted that the antidepressants would sort that out.  After a few weeks my on-going gut problems got so bad that I couldn’t keep any food inside me.  I was taken to hospital and eventually had a barium enema which showed little.  I felt that the antidepressants had been the catalyst to the stomach problems and asked to come off them.  My stomach improved and  as I started to feel a bit better the doctor insisted that I go back on them….what a mistake….chronic gut problems again which got so bad that I could barely make it to the loo. 

I stopped taking the antidepressants again and my gut improved although it has left permanent problems for me.  Meanwhile my headaches became so bad that I wanted to smash my head into the wall, my sight deteriorated to a worrying degree and I have lost two and a half stone in weight and just for good measure the buzzing in my ears is so loud that it drowns out even the t.v.  I spoke to the GP again about the throbbing headaches and was put on yet another antidepressant which left me like a robotic zombie and I had to stop those too.  I remember sitting on my bed in tears thinking that my body was not working properly and now they've stopped my brain from working too!

At this point my daughter became involved and phoned my surgery to ask what exactly they had planned to make me better.  The doctor who she spoke to knew nothing about me as I have had no one consistent GP throughout the whole episode.  The next day my daughter spoke to another doctor who said that there had never been any record of me having headaches or such symptoms but agreed to look into it.  After a call to me in which I stated that at least four different doctors had been informed by me of my throbbing head, loss of vision etc I have now been referred for a brain scan.  I hope that they find something…anything….because at least then we can start to make things better.  But why did it take a third party to get involved before they took my symptoms seriously?  I am articulate and intelligent and yet they simply saw that many years ago I had suffered from anxiety and looked no further.

I tell you all this, not for sympathy but because of the variations of attitude from medical staff and from the people around me (I exclude my wonderful daughter from this list).  When I was told it was mental health issues I was literally told to ‘pull myself together’ and was avoided by those around me, but when it looked like a physical problem I met with understanding.  I still don’t know what the outcome will be and, if it is a mental health issue, I feel I have as much right to it as I do to a physical condition.

I’m trying to keep strong while I wait for the scan and will keep in touch and let you know what happens.  I can’t wait to get back to work again and to hearing from my readers again because I love what I do and miss it dreadfully.  I do write a little for the site on the odd good day and keep an eye on what is going on every day. 

I truly feel that my history of anxiety disorder has caused my GP to ignore any physical possibility. If any readers have experienced a similar experience by having to fight to be taken serious over physical illness because of a history of mental illness please let me know.

Comments

Liz, I had a similar experience in my 20s when I started getting abdominal pain. The GP, who had obviously read my notes, immediately said "depression" without any examination. I had been treated for depression in my teens and as far as I was concerned had moved on, apart from a few ups and downs that were no different from what "normal" people were having. Eventually I got a referral and a physical cause was found. The GP did not apologise. Good luck Liz Maggie

Thank you so much for your comments and good wishes Maggie. I feel so angry that you get treated differently if you have ever had a mental health disorder. It is so wrong and must be changed...by speaking out we could make a difference. If and when a physical problem is found they can stuff their apologies and I will expose the culprits and make them accountable for months of suffering.
Thank you for taking the time to read my account and for commenting.
Liz

I absolutely understand. My pathetic mental health community team and cpn completelt overlooked by visual impairment over the year they have been with me. Needless to say complaining against all:)

Thank you so much for taking the time to leave your comment. I feel sure that many people who have had mental health problems find that their physical health is overlooked and this is so wrong. I wish you all the best....and I agree that complaining doesn't seem to help in any way!
It is so good to get feedback from readers and to interact with the people that we are here for....thank you again.

Oh, Liz... Good grief! I can TRULY empathise with EVERYTHING you write. Thank-you for opening up in this manner. Your sharing of experiences may prove invaluable to some (like me!)... I totally agree that medical professionals can act in a dreadfully non-professional manner when it comes to the subject of diagnosis and treatment of certain patients. You are right to state that many people who have experienced mental health problems (and even some who have simply been suspected of having mental health problems) find that their treatment by the medical professions can become prejudiced. What you are so brilliantly highlighting is the fact that STIGMA and PREJUDICE exist and are openly at work within the medical professions. This is truly disgraceful! Doctors, nurses, social workers... ALL medical professionals are supposed to adhere to a code of ethics, and are meant to follow anti-discriminatory practice. However, it remains clear that many of them continue, even after their medical training, to hold onto and to display the exact same prejudices as the average "lay person". Mental health problems have been stigmatised for many, many years. This has lead to the unnecessary suffering of many people, who find themselves criticised, reviled, ostracised and unfairly treated in innumerable other ways, simply because they are labelled (correctly, or otherwise) as mentally unwell. Some of the stigma attached to mental illness appears to derive from fear, and lack of understanding. However, given that medical professionals; many of whom may have received training in respect of mental illness, and ALL of whom will have received training in anti-discriminatory practice; still stigmatize mental illness, we must understand that the DESIRE to stigmatize individuals is a decisive factor in respect of its taking place. This desire to stigmatize others clearly cannot be overridden by education and training (as in the case of medical practitioners). Evidently, stigmatization of others is a common human trait, and may result simply from a perverse form of "Schadenfreude" ( a desire to take delight in the misery of others). Simply put, many humans like to make themselves feel good at the expense of others. Here, I can (for whatever it's worth) offer you the benefit of my insight. I have found myself in the peculiar, and uncomfortable, position of being both healthcare practitioner and patient at the same time... To be as brief as I can: I am the daughter of a mother who has Bi-Polar disorder. I was a child carer. My father was physically and verbally abusive. My mother was verbally abusive. I coped as best I could as a small child, but struggled increasingly throughout my teens. I have had respiratory problems for many years, possibly relating to a congenital defect of my sinuses. My mother reports I had serious respiratory problems as a baby, which lead, in part, to her getting Post Natal Depression. I still have recurrent respiratory infections. I also suffer from chronic low Ferritin and Haemoglobin levels, which due to my experiencing very heavy periods, lead to Anaemia. As a teenager I was put on the Pill due to heavy and irregular menstruation. Throughout much of my life, I have experienced frequent infections, including several bouts of Sinusitis, Bronchitis and possible Pneumonia. I sat exams at University in the Sick Bay with a terrible chest infection. ALL OF THIS SHOULD BE DOCUMENTED IN MY MEDICAL RECORDS. In 1996, only 2 years after Graduation, I ended up having to have surgery to clear out and expand my sinuses due to recurrent Sinusitis. My employers were VERY bitchy about the time I had off, and I reported this to my G.P. because it left me feeling stressed. I asked for counselling, in order to discuss the fact that I felt bullied at work. My regular G.P. was on holiday at the time. I saw one who was unfamiliar with me. Consequently, he diagnosed Clinical Depression (wrongly, in my opinion) - I had NEVER expressed suicidal ideation, NEVER self-harmed, I was NOT withdrawn, still held down a job, still had hobbies and was still attempting to get on with my life. He sent a medical report to my employers. This was both without my consent, or my having been offered a chance to see the contents of the report. I only found out about my so-called "diagnosis" of "depression" many years later, as it re-surfaced to cause untold problems. By 2006, I had done further University study and had been working for several years successfully as a Social Worker. Unfortunately, my menstrual problems had become very bad. I suffered immense pain with every period, and also felt fatigued, light-headed, nauseous and "moody". I attended my G.P. repeatedly to express concern about these problems, as I found myself increasingly requiring time off work around my periods. I also kept getting loads of infections, and felt generally very "run down". My G.P. presented as very dismissive, and appeared pretty much from the outset to view my symptoms as psycho-somatic (hypochondria?). Weeks, months went by and I felt increasingly ill, and ignored. As per previously, I found my employers very unsupportive - which distressed me immensely. I began to question why it was that both my G.P. and my employers did not seem to want to listen to me, or to take my illness and symptoms seriously. My frequent infections made life a misery, my heavy and painful periods were hell, I had bowel problems and tender glands... But... I was expected to drag myself into work, manage a heavy and complicated caseload, and continue to function as normal. Otherwise, I faced disciplinary action! 2006 was a nightmare year! Unwell, overloaded at work, unsupported... and to make it worse, my father-in-law died of cancer and my mother suffered a relapse of her Bi-Polar symptoms due to a medication mix-up! To this day, I still have NO idea how I coped. I must have been on "auto-pilot"! Still, I was referred to a Gynaecologist. WHO WAS USELESS! He was never at the appointments I was meant to have with him. I just saw locums! Years passed. No change in symptoms. No support from doctors or employers. In desperation, I sought any answers available. I requested counselling again, thinking I must be depressed (my doctor was quite happy to let me believe this, and attributed ALL my symptoms to it). Not helpful. I saw a dietician for my bowel problems. No help. I had tests including a colon biopsy and a hysteroscopy with D&C. I was told results were "inconclusive". I saw a Rheumatologist - again "inconclusive". My recurrent respiratory infections continued, despite the doctor saying he could find no cause. My menstrual problems worsened. 2010 and I was desperate. My career was in tatters (due to being unable to control my symptoms, and needing time off work), my health a complete mess, and I was unable to conceive. My doctors all seemed adamant that it was all psychological (stress?!). However, my husband and I were NOT convinced - after all, how many people have "psychological" problems that only occur in conjunction with the menstrual cycle! I began keeping diaries of my symptoms, listing what they were and when they occurred. Utterly "anal", I accept; but I truly felt that unless I was completely meticulous, I would be unable to ever get my doctors to listen to what I was trying to tell them. FINALLY, I got referred to another Gynaecologist for a second opinion. Here's where it gets interesting! This Gynaecologist said IMMEDIATELY that he thought I had Endometriosis. I was listed for surgery (which I had in April 2011). The surgery confirmed I do indeed have Endometriosis. Since then, I have had 2 further surgeries, both to try to remove Endometriosis growths. I may end up requiring a hysterectomy. Puzzled as to how THIS Gynaecologist could be so decisive as to my diagnosis, I requested to see my medical records. My G.P. has been very evasive in this matter - to date, I have seen only SOME notes. There is clear evidence that a lot of my notes are either missing, or have been deliberately withheld (gaps of YEARS, in some instances). However, the notes that I HAVE seen made VERY interesting reading indeed. This is what I now know: 1. That I was diagnosed in 2006 with Post Viral Syndrome (M.E.), but was NEVER told this diagnosis, and NEVER received treatment. 2. That following tests in 2007/ 8 several doctors suspected I had Endometriosis, but for some reason this was overlooked. At least 2 letters from Hospital consultants mention possible Endometriosis at this time, but they were clearly ignored. I was never told of this. 3. That when I was told that nobody could find a reason for my heavy periods, the Endometriosis could have been causing them. 4. That when I was told no reason could be found for my recurrent respiratory problems, in truth there were SEVERAL possible causes, ALL known to my G.P. and Hospital consultants - that I had ASTHMA, that I was ANAEMIC, that I might have M.E. and finally, as listed on a C.T. scan, that I had congenital deformities of my sinuses and nasal passages. I was never told any of this. I also know that my medical records' confidentiality has been breached on several occasions. It transpires that MORE THAN ONE report has been sent to my employers without my consent or knowledge. I am also shocked to have learned that some of my medical records appear to have got separated from the main body, and may now be mixed with those of another patient with a similar name and birth date! Finally, and worst of all, I am horrified to read some of the entries in my notes! One entry records treatment that I have NEVER had; further entries include comments of so personal and offensive a nature as to make me question the fitness to practice of the doctor who wrote them. Get this! My original Gynaecologist writes that he feels my inability to conceive, and my menstrual problems/symptoms, are all due to "anxiety" which means I am "not having sex"! Since when did receiving medical treatment also include submitting to character assassination? I suspect that either a) because my mother has mental health problems, and I have disclosed this fact, or b) due to past misdiagnosis, ALL my current problems have been passed off as psychosomatic. To the extent where actual physical diagnoses have been overlooked, withheld or suppressed in favour of a "mental" explanation. As a medical professional in my own right I am horrified, disgusted and ashamed that my colleagues could act in such a manner. I am well aware that it happens to others, as well, and can only sympathise. Like I said from the outset, prejudice is alive and kicking, and rife amongst the medical fraternity. For example, look at some recent cases where medical "whistleblowers" have been labelled mentally ill as a way to push them out of their jobs. You might like to access the following for examples: en.wikipedia.org/wiki/List_of_whistleblowers medicalwhistleblower.blogspot.com/ www.independent.co.uk/.../exclusive-nhs-watchdog-claimed-that-whistleblower-kay-sheldon-was-mentally-ill There are others, as well - a simple trawl of "Google" will enlighten you. The sad fact is, that individuals (medical professionals included) will often jump to conclusions. Conclusions which may turn out to be erroneous. This is made much more probable due to the fact that the NHS has placed time limitations upon the duration of appointments that a person can have with their G.P. or practice nurse. Many hospital appointments are also time limited. How do we expect accurate diagnosis to be arrived at under such conditions? Doctor's appointments last on average 8-10 minutes (NHS Choices website). Is this long enough to get all the requisite information and form a good picture of what is going on? I DOUBT IT! Furthermore, many people find it hard to get appointments when needed, and often do not consistently get to see the same doctor, disrupting continuity of care. Perhaps, under such circumstances, doctors simply "plump" for what appears to be the most likely, or the easiest, option? In sum, there are many problems that your frank expose highlights. These include too short consultation times, during which a doctor cannot get an accurate picture of what is wrong. They also include lack of available appointments, inappropriate referral or lack of referral for tests or to a specialist, and lack of knowledge concerning certain medical conditions (which may be rare, or easily confused with others). Sadly, problems also include the continued stigmatization of, and prejudice towards, mental illness - even amongst medical professionals. Liz, stick at it. YOU know your body, your symptoms and your health best. Sometimes, we have to persist until somebody believes us. Sad, but true! Still, the problem is NOT yours. The problem is with the person who cannot see beyond the fact that you were once suspected of having mental health problems. So what! That does not make you any less human, any less capable of becoming physically ill, or any less deserving of careful and conscientious diagnosis and treatment. Sorry to have gone on so long, but I felt that it was important. If anyone (including yourself) reading this feels compelled to do something about it, then maybe they could sign my e-petitions: 1. Open-minded, not one-track-minded, diagnosis please". This can be found at http://epetitions.direct.gov.uk/petitions/34955 Other petitions are found at: http://epetitions.direct.gov.uk/petitions/34879 http://epetitions.direct.gov.uk/petitions/34851 http://epetitions.direct.gov.uk/petitions/34687 http://epetitions.direct.gov.uk/petitions/34684 Thank you. All the very best, Elaine.

Hi Elaine,

Thank you so very much for your response to my blog. What a dreadful time you have had - I am so pleased that you seem to have at last found some satisfactory diagnosis but what a fight you had to get it and when you feel that fighting for your rights is beyond you.  I am still fighting but seem to be shouting at a brick wall for the time being - this won't stop me though.  I hope that there are not too many others who find themselves in the same situation although I suspect that there are probably many.

Again, many thanks for taking so much time to tell us your story - I hope it inspires others too.

Liz

 

 

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