Jigsaw

Encounters with the Medical Profession

For this question, we were keen to learn about people's experiences with their GP, consultant/ lupus nurse etc.

People wrote about their treatment overall, the way they were treated when they had a GP or specialist appointment, how involved they felt in their treatment or, perhaps, the usefulness of the information they were given.

Beth

...My GP originally told me that it was me...

Georgia

...I do not have a lupus nurse, didn’t know they existed...

Lillian

...I find I'm able to be very involved in my treatment....

Heather

...As for my GP, they are also good although not so experienced...

Leah

...he was surprised at how rapidly I had gone down hill...

Louise

...My GP is great but there is only so much he can do...

Laura

...Self diagnosis is quicker...

Fatima

...I am told I cannot try for a baby now as the lupus is still active...

Clare

...I wonder if my lupus would be less severe if it had been treated correctly earlier...

Sophie

...I got diagnosed at the second visit...

Rebecca

...I suffer with the effects of the illness daily...

Sam

...today I’ve hardly been able to walk up a flight of stairs because my joints ache...

Niamh

...he claims he wants to fit my treatment around me whilst knowing nothing about me...

Bev

...My old consultant was very quick to wash his hands of me...

Niki

...There have been a few hiccups along the way...

Naomi

...Even the best professionals are battling against the tide in terms of time...

Gabi

...I have always concealed my illness from my employer...

Minhal

...My new GP is supportive but he can only help me so much as he is not a specialist...

Lily

...The medical profession are an enigma...

Alice

...I have had to fight long and hard for the doctors to give me my diagnosis...

Jigsaw

Ava

...the G.P. sent me to the psychiatrist because he said it was all in my head...

Jigsaw

Amelia

...I've also had a pretty bad experience...

Jigsaw

Esme

...I really value the trust my doctors put in me to self manage...

Beth's Story

My GP originally told me that it was me or that I was overweight and suffered from depression. It wasn’t until I had suffered 7 miscarriages in a period of 5 years that I saw st Thomas’ hospital on a morning tv show and I thought all those symptoms is what I have. I had to go private for my original diagnosis to st Thomas’ hospital but once the diagnosis of SLE and Hughes syndrome had been made the NHS paid. The lupus nurse is second to none with great information especially during my pregnancy with my little girl

Georgia's Story

I feel very alone with lupus...I have rarely gone to a GP as on the odd occasion I have I am told its "normal" to have this ill feeling(or whatever ailment I have gone with) with lupus. Even on specialist appointments everything is rushed, nothing is explained. On one occasion I was very ill (barely able to walk) and told that everything was ok as the lupus was "not active”. It took another 6 months and life being horrible with various symptoms, that I had to get angry and say I’d like someone to try and find out what was going on as they say the lupus wasn’t active, yet no one was willing to offer any help or advice as to what was wrong with me.

I do not have a lupus nurse, didn’t know they existed!! and I see a rheumatologist every 6 months (for all it helps) and a kidney specialist (who is great but can’t deal with lupus symptoms, just the kidneys).

Lillian's Story

My GP practice and INR nurse at the practice are great, my GP didn't know a lot about lupus when I joined the practice but I gave them literature and he went away and investigated lupus, they're so supportive and helpful, I try not to visit unless absolutely necessary( the place is full of sick people, I tell them)They know if I turn up there I'm very unwell.

I see my INR nurse every four months to synchronise and check my machine, I'm self testing as my INR is unstable and I have to adjust doses of Warfarin. If I have any problems I only have to phone in and I'll either be seen or get advise over the phone. I also have clexane to take if my INR drops too far out of range.

I go to St Thomas' every 6 months, again the support is great, you have everything explained, it's an exchange of where your at health wise, what can or can't be done. They're good at liaising with GP and sending a copy letter to me.

My local hospital are great and extremely lupus/Hughes aware, in every department I've had to visit, something that surprised me as my previous health area weren't! The only area I find it falls down on is getting my local hospital to send MRI/ inpatient info to St Thomas'! This communication needs to improve.

I find I'm able to be very involved in my treatment.

Heather's Story

I have lived with Lupus for 24 years.
My experience with my Consultants (I have loads wrong with me) is wonderful. I am under NHS Grampian in Aberdeen and have absolutely no problems whatsoever (I probably shouldn't say this in case something goes wrong!) The Consultants work with me, my lifestyle and Lupus and I also have control over my drugs and how to adjust my warfarin for my INR. My treatment is based on both parties being happy and working together to ensure that I have the best possible life that I can lead with this devastating illness. I generally see my haematologist every 4-6 weeks and my other consultants on a 6 month basis or more if necessary. The lupus specialist, in my opinion is the least involved. I currently see him on a 6 monthly basis but this was on my insistence as he only wants to see a lupus patient yearly. As far as I'm concerned that just isn't good enough. A lupus consultant should be involved on a 3-6 month (or more) basis not yearly.
As for my GP, they are also good although not so experienced. I have a working relationship with them but I find that they can be quite skittish when it comes to some of my treatments (I am heavily medicated) and in particular my INR levels (I have a very volatile INR). I keep them as up-to-date as possible and try to see my regular GP on a 6-8 week basis to keep them involved, although they do get regular letters from my consultants.

I do not currently have a lupus nurse. My experience with the nurse specialists which we had before (not specifically lupus based but part-time on it) was generally good although they did not seem to have a focus on what their role should be with a lupus patient, so I felt that was rather pointless. But since I can talk the hind legs off a donkey about me and lupus, I enjoyed chatting with them.
Hope this is of some help to you.

Leah's Story

My symptoms first appeared just around late December after Christmas 2008, when I thought I was coming down with flu. After constant chasing on 3rd blood test I find sent off to the wrong place. By this point, all the docs kept giving me stronger pain killers. I couldn’t move I was in agony all over my body to the point I couldn’t lift a cup, I had to have my mom dress & undress me and even had to have a special mobility handles fitted to the bath. Not that they helped as I couldn’t lean on my hands or had the strength to lift myself out.

I noticed then that I had this rash, I was constantly feeling sick, severe muscle weakness, and like what I call a foggy head. I kept getting random parts of my upper body going numb, and had started to develop a sharp pain under my left ribcage which hurt when I breathed in. After 5-6 weeks I started to get sharp shooting pains in my chest and struggled to breath, and was actually rushed into hospital by my dad to A & E. An ECG confirmed heart was ok thank god. By this point I had been on Lupus UK which was a god send, well my docs had certainly not given me any information regarding lupus, not even a mention to any support websites. However, I was reading the symptoms so I knew what to expect but at the same time thinking I was going to get every symptom, although the site did state not everyone has all symptoms and they vary.

Anyway I was lucky enough to see a lupus/RA consultant on the Tuesday who was just fantastic and so understanding. He had looked at my blood work ESR now being at 96 and from all my symptoms said I 100% had lupus. Even things I had not initially thought of such as are you allergic to penicillin or have allergies well a lot of things I am. Do your finger nails turn blue /red/white - yes they do. Have I ever suffered from Migraines… yes. I also had what I call a foggy head at this point where I found it hard to remember anything. I also had the telltale mallar rash. The pain in my chest/lungs was actually the lupus affecting the lining of my heart and lung, and that with my symptoms was advised I had CNS Lupus where it affects your central nervous system. He was very calm and informative and explained all about the nervous system controlling every organ. He was so friendly and nice, saying how I should not have had to suffer so long that the test my docs sent off actually takes 24 hours. So really I’d gone through all that suffering for nothing.

He also said he as surprised at how rapidly I had gone down hill. In most cases it can take years to diagnose as people often get a few symptoms and mistake it for something else, or docs will miss it or misdiagnose it, as so many of the symptoms are underlying for other ailments and illnesses. Well immediately I was prescribed 60mg prednisone, and my god it’s like a miracle drug. Literally the next day all my pain had subsided! I have since changed consultant, but my first consultant was very helpful giving me a card with helpline number, leaflet, and advised on lupus website, support group in my area.

One thing I will say is that consultants don’t have as much time as they would like with you so you are pretty much expected once they give you resources to find info on Lupus as much as you can. You feel you are wasting their time if you ask a question they feel you should know about. On occasion I did this and all I got was have you not found out about this, you have the information. It’s a shame there are not more specialist consultants in my area, there is like one to cover the whole county. I believe now there is a new scheme where a visiting doctor goes to the various medical practices, which I guess frees up a lot of time, but I have concerns that something will be missed as these docs are not specifically trained to deal with Lupus.

In respect of how involved I feel in my treatment, I think a lot of it has to be with you being armed with knowledge, knowing what to look out for.

Louise's Story

My GP is great but there is only so much he can do. I see a rheumatologist once every 6 months or so - sometimes it is longer. I only get to see the specialist if I ask, otherwise I get to see a nurse. The last time I saw the specialist (about 2 weeks ago) she was very brusque and treated me as if I was an interruption to her day, I felt like she wanted me out of there asap. I have been having severe back pains for a while now, and she insisted this was nothing to do with my lupus - but did not say what else it might be, or why she was so sure it wasn't lupus.
Also I go once a year to have my eyes tested as I am on Plaquenil and it can affect the eyes. This examination is not worth the time and effort to go. I go to my optician to make sure my eyes are OK and he does a thorough examination. At the hospital they ask me to read some small print, and then compare that to what I could read last time. BUT, they take no account to if I am wearing my glasses or not, or if I have had a new prescription from the optician - so the test is worthless. I have mentioned this twice to them but it seems it is a box ticking exercise for the hospital.
I have complained to my GP and he is happy to refer me to a different rheumatologist - but to be honest from what he says I don't expect them to be any better.

Laura's Story

I had symptoms when I was 26 and saw a Rhemu . I was told it was "Getting Old" went away and started losing my hair at 21 and was told it was diet, hair products. Had my first panic attack at 31. Went on anti depressants Prozac then Ciprlex now Seroxat. Had joint pains as long as I can remember, but it was put down to being 1 stone over weight. Had the growing disease growing up. My current Rhemu I see once a year. My GP just treats the symptoms. Anaemia, noone knows why. What type it is. Why I am still losing my hair. I now wear wigs. My case is mild, but it does not feel mild when I have a flare and can sleep for twenty hours in a day 8-10 hours at a time. The medical profession do not explain things. I went away with Google and found the answers. Then took my questions to my GP and Rhemu with the answers for confirmation. Self diagnosis is quicker.

Fatima's Story

I was diagnosed with SLE last year in July. My GP was very good and referred me to a rheumatologist at the Royal Free who diagnosed me. They found out my kidneys were affected so I attend the nephrology department regularly now. I had CT scans and now they are saying I have a problem with the thyroid glands and I may need an operation. I have had no contact with my GP since I was diagnosed, I just go to the hospital now.

I find the doctors at the Royal Free very helpful but sometimes they do not know what to do as they are not lupus specialists. I had an appointment today and because I want to have a baby they finally told me that I need to go to a specialist maternity unit. They suggested UCL or Hammersmith, anyone to recommend a good one?

I am told I cannot try for a baby now as the lupus is still active, but I am desperate to try. I was told the same thing 1 year ago. It is so frustrating, I am 30 years old and healthy, apart from the lupus, and it is now stopping me from starting a family :-(

Clare's Story

I feel I am very fortunate with the treatment that I have from my GP and lupus consultant/nurse since my lupus diagnosis, I feel as though they listen and give me the best treatment they can. At times when I have needed urgent treatment it is always possible to access it quickly. I think that the treatment pre diagnosis was unfortunately quite damaging psychologically. I think one aspect of treatment that is lacking is in the emotional and psychological support, I think it is very difficult to come to terms with the disease and its effects on you as a person, and to deal as well as possible with the disease.

In answer to your question I feel that being (mis)diagnosed with a mental illness (PND) for several years was damaging because a)it meant that I wasn't getting medical treatment that would have improved my illness, I wonder if my lupus would be less severe if it had been treated correctly earlier b) Being 'labelled' with a mental illness diagnosis was very hard, nobody listened to me, I was given drugs that didn't help, and when I wasn't getting better was threatened with a section and ECT treatment. I feel as though the diagnosis I was given stopped the medical profession from looking beyond that label, and interpreting all of my symptoms within the context of that diagnosis c) it pretty much destroyed my confidence and self worth, and made me have less confidence in the medical profession, I still struggle with seeking out help and treatment when I need it because of that period of time, particularly with the SLE brain involvement that I have, which can look like mental illness I am always scared that rather than treating the lupus flare I will wind up sitting on a psych ward again; even though my current GP and consultant are fantastic I feel that I still carry the baggage from the poor treatment and misdiagnosis I received. Sorry that is quite long, I hope in some way it is helpful!

Sophie's Story

I had mixed experiences; the GP was a joke. I was more or less crawling into her office and after describing my symptoms got smiled at and offered some Ibuprofen. I eventually got put on a waiting list to be seen by a Rheumatologist, and I waited and waited. In the end my employer paid for me to see a Rheumatologist privately. That was my lucky day! He must have had a suspicion right at the first appointment. I got diagnosed at the second visit, when the test results had confirmed SLE. I am extremely thankful to him, as he always builds me up, gives me hope & confidence, listens and takes my problems seriously. I have his email for tough times and he supported me throughout my pregnancy and even offered a visit in the maternity ward should I have needed him. The nurses are also all fantastic. I am full of praises, but I know that many Lupis are not that lucky and that this is unfortunately not standard.

Rebecca's Story

When I first got ill the GP fobbed it off as a virus. I was only 15, so my parents were mostly dealing with it all - it’s all a bit of a blur to me.

We were fobbed off on numerous occasions by the GP until the last time we saw a locum doctor and she did blood tests and discovered there was something showing up.
I was referred to a rheumatologist and was put on 40mg steroids daily straight away. This did help but the consultant was reluctant to diagnose me as he did not want to 'label' me. However we just wanted a name for it so we could start to deal with it.
This consultant would often try to see me without my parents and fob them off but as I was under 16 my parents weren't happy about this and decided to move me to another hospital.
At this hospital I was under a children’s rheumatologist, she instantly diagnosed lupus and started me on hydroxychloroquine. This helped but I was still on steroids and finding it very hard to get below 10mg a day. they then decided to put me on methotrexate which definitely improved things.
I often had flares - particularly when I became ill with a cold or virus. Or if I was stressed,
I somehow managed to stay under the children’s rheumatologist until I was 19 and then moved to the adult rheumatologist.

It was more difficult in an adult ward as it was mostly elderly people which can be a bit scary. Now at age 25 it doesn’t really bother me. The doctors are good and the treatment in terms of drugs has worked well. Sometimes I don’t think they can understand the extreme tiredness and pain that you feel. I have had a weight problem for most of the time I've had lupus, I’m not saying it is the lupus but it’s a major factor and I always feel the doctors think I should be exercising and losing the weight. It’s not so easy when you’re in that much pain and that tired. It would be nice to have more support networks related to the hospital where you can get advice etc.
We have gone to local lupus groups before but unfortunately the one we went to was full of women who were very bitter about their illness and had almost given up on life so it was not helpful to a 15 year old to see that.

The problem I do have is that I can’t have my blood tests done at my GP, as they won’t send them to my consultant, I have to go up to the hospital every time I need a blood test so that my consultant gets the results.

The transition to adult services was admittedly quite a shock. In the children’s services it was a bit more supportive and caring and I was used to having a close relationship with the nurses etc. In the adult services these bonds aren't there so much so it is a bit scary. Also you are surrounded by mostly older people with other conditions such as arthritis which can be a bit intimidating.

The treatment all in all is pretty good but I think support and advice could be better.
I would like to see a database of people if you like volunteers that have lupus and have a positive outlook on life so that they can give advice to people who develop lupus and show that it is not the end of the world and you can still do the things you want to do.

This would have been so useful to me at the age of 15 - I needed to hear that I wasn’t going to end up relying on my parents to care for me and that I would still be able to get my education and have a job etc.
Luckily I had amazing parents and an amazing boyfriend to make me realise this, but many people won’t have that. I would like to see a database of people who are willing to share their experiences on hand to every consultant dealing with lupus so they can give this opportunity to the patients.

I think having a positive attitude is the only way to cope with an illness like this. Don't get me wrong, I'm not on top of the world all of the time. I have my down moments and there are still days when I wake up and wonder how I’m going to get dressed let alone go and put in a day’s work.
However, I think positivity can be a 'drug' in itself. I have learnt that mind over matter has to be present with an illness like lupus. Most days something hurts or I’m extremely tired, but, if I didn’t force myself to do things then I’d just be sitting at home feeling worse and becoming depressed.
For a long time, I thought Lupus almost defined me and that was the first thought in everything to do with my life. I decided that wasn't the way to be - I now prioritise the things I want to do and make my lupus work around that.

I don’t mean to sound like being positive is easy and that lupus is easily forgot about, I have suffered with depression in the past and I do suffer with the effects of the illness daily.
I have had to compromise on smaller things in life, but refuse to compromise on my bigger aspirations and goals.

This is why I think having a resource for recently diagnosed people to be able to contact people who have lived with the illness and managed to lead full lives is so important.

Sam's Story

I have Lupus and APS and I have to say that I find it all rather hopeless - I was recently taken ill with a standard illness, but the GP kept mentioning to me that it must be the Lupus/APS that was causing the symptoms and no one would actually listen to me, in the end I paid to go to the Lupus Unit at The London Bridge Hospital privately and felt like a fraud! I take anti-malarials which seem to work (although today I’ve hardly been able to walk up a flight of stairs because my joints ache - and I'm a pretty active 36 year old - who was due to run a 1/2 marathon in 10 weeks time but not sure that's going to be an option), all symptoms I am told are 'side effects of Lupus' I definitely don't want to be an ill person but do not feel there are sufficient resources out there.

Niamh's Story

The ideal form of treatment, for me, would be locally provided blood tests at appropriate intervals (I get these from my practice nurse but my consultant occasionally gets hysterical about how he should be doing them himself, owing to a crisis which wouldn't have been caught by them anyway - he's not the most logical of creatures), with visits to a specialist only if something actually went wrong or if I felt I needed help. I find the business of being required to waste a whole afternoon and place myself at significant physical risk dragging myself up to the hospital every three months to be nonsensical, intrusive and profoundly irritating. It always puts me in a bad mood and then my consultant frets and asks me patronising questions about my mental health, as if it were any of his business.

He also tends to put every instance of stress down to my illness, as if I had nothing else going on in my life. And he claims he wants to fit my treatment around me whilst knowing nothing about me. He assumes I'm heterosexual, cissexual and monogamous and that my own well-being is, or should be, my prime concern in all circumstances. I don't think he's really aware of how nonsensical all this is so I try not to get visibly annoyed with him - he's a hard-working guy who seems genuinely dedicated to helping people - but every time I leave I find myself wishing I were still well enough to go down the pub and get plastered. On the other hand, my GP is lovely, fully understanding and supportive. I guess you win some, you lose some. When I was an inpatient following my stroke a few years ago I was very impressed by the way I was treated by the critical and renal teams, even though I found the environment psychologically difficult and got out of there as soon as I could. They were respectful of my family and, though we were really from different worlds, they did their best to help me emotionally as well as medically. I just wish they had given me a brick to throw through that damn television. There's nothing worse, when one is too sedated to move, one's retinas too scarred to read more than a page per half hour, than to be stuck in an isolation room subjected to the iniquities of STV Daytime.

Bev's Story

When I first went to my GP the service he offered was fantastic, he put me on painkillers straight away and referred me to see a rheumy asap. Unfortunately, the waiting list was 4 months so my parents paid for me to be seen privately. Once my blood tests had come back my consultant moved me to his NHS list as my bloods were very mixed and my symptoms quite severe for a 19 year old.
That was all fine and I saw my consultant every 4-6 weeks and my GP every fortnight. They were both great, listened to my concerns and I was able to make my own decisions about what treatments to start (at this point I was very against steroids because of the side effects). As my symptoms became more severe I was told I needed steroids, but I was very reassured by my consultant and he monitored me closely.

During a huge flare (I have described in another post) where I was in liver failure, I had to change consultant because of the hospital I was admitted to and the severity of my problems at the time. My old consultant was very quick to wash his hands of me and seemed very glad to have another consultant take me on, he told my parents I was too ill to be moved to his hospital and should just change consultant there and then. That's what I ended up doing and am now being seen in Dundee. The consultant is great and really listens to all of my problems. They are very quick to throw drugs at me though and I now get very little say in what treatment I have. The one thing the rheumy is terrible at is any form of pain control, I was eventually referred to the chronic pain team (got to skip the waiting list because I was an inpatient!). They are great, so supportive and really really listen to what will make your life easier and more comfortable. By far the best help I have been given has been to deal with the consequences of my symptoms as it appears dealing with the cause of them really doesn't seem to successful. I have been put on CellCept, an immunosuppressant as well a whole host of other drugs and pain killers. The pain team also arranged for me to have lignocaine infusions to help keep my pain to a tolerable level.

Niki's Story

Other than my initial consultation with a locum GP, who predictably told me I had a virus, my experience has been positive.
My GP surgery is great - the doctors are supportive and patient. I tend to turn up questioning if the symptoms are all in my head; but my suspected UTI was confirmed as such by dipstick, my IBS symptoms are now looking like Coeliac disease and so on. They reassure me and tell me not to hesitate to come in if I need to.
The dermatologist I saw made an accurate diagnosis on my first consultation, followed up and confirmed by biopsy. He also suspected lupus (but did not share with me) and so arranged relevant bloods. The only criticism I have is that these bloods took 3 months to find their way back to my file!
The rheumatologist I see is great - although she is German and talks very quickly, and can use words (like 'congenital') that most patients may not understand (I do from my occupation). She follows me up well, explains the bloods, suggests treatment to me and asks me how I feel about it. She copies me in on letters to my GP if I ask, and this also helps me to understand what's going on.
Recently I saw another rheumatologist (junior Dr under my consultant) and he too was very good. He explained things well and was frank with me - telling me that I must 'face facts that I won't ever be able to do the exercise that I used to' and telling me to rest more when I feel tired (I was fighting it).

There have been a few hiccups along the way - my rheumatologist wrote to my insurer (for a claim I am making) saying my symptoms had completely resolved on Rx (they haven't) resulting in my claim being declined, but I think this was because she didn't fully understand my situation and thought that she was helping me get back to work full time..... I'm now appealing the decision and hope it will be resolved soon.

Naomi's Story

My encounters with the medical profession have been as varied as the individual professionals themselves. Generally speaking they fall in to two categories.
1. Awful:- frustrating, judgemental, lack of knowledge, lack of compassion. It was encounters with professionals like these which considerably delayed my diagnosis and have hampered my ongoing treatment and management of the disease.
2. The second category however is Brilliant :- I have also been treatment with kindness, compassion and respect and treated by professionals who not only have a good knowledge base but also have the empathy and interpersonal skills to explain diagnosis and treatment in a way which empowers you.

This is entirely down to the individual and it is not possible to say that doctors are better or nurses are better.

As a nurse, I was aware that this could be the situation I would face; what I did not know was just how important this would be to me. I have left some consultations feeling really empowered and positive and others totally frustrated at a professionals lack of knowledge and understanding.
My current rheumatologist, GP and surgery staffs are brilliant and I feel very secure with them. They understand my need to monitor my own bloods and to totally understand my disease and its management.

My Rheumatology nurse specialist is a bit of a disaster. She doesn't seem to care, is never up to date with your blood results or history, lacks specialist knowledge and is very indecisive. This has cost me dear at times; the first of which was when I ended up jaundiced, with liver problems as she hadn’t monitored my bloods after my commencement of a new medication. Hence why I now monitor my own bloods. The last time I saw her, she was in tears about how stressed she was and I had to counsel her....Thankfully I was quite well at the time.

Another problem is the underfunding and under-resourcing of the NHS. Even the best professionals are battling against the tide, in terms of time, cost and availability of services.
Because of this care is always fragmented and there is no one person who brings, practical help, medical knowledge and psychological support all together.

I manage my lupus myself as much as possible out of choice. Doing so makes me feel more empowered and in control.

That said I only started to assert myself and monitor my own bloods, after the lack of monitoring from my Rheum nurse and then GP meant that I developed liver failure (thankfully reversible).
Taking a proactive approach to my disease has allowed me to both question and suggest treatment options; plus I view it from a holistic perspective, rather than dealing with one symptom or system at a time. I do always feel that my rheumy nurse is somewhat glad that I know where I am with my disease and what if anything needs doing, when I see her. With my GP, it seems to be a mutual benefit and she always asks my thoughts and opinions.

The benefit from remaining in contact with the rheumatology nurse is that if I am ill and need to see or speak to my consultant, she can get me back into clinic quickly. However when she was on long term sick and I was ill; I went through my consultant's secretary and she was far more efficient.

Gabi's Story

I was initially diagnosed after a late miscarriage when I was 23, I was in the armed forces and for a few years had been complaining of joint pains, migraines and hands and feet turning blue.. at first I was sent for a psyche appointment as they thought it was all in my head, spoke to a fantastic doc who assured me my marbles were fine and sent back to unit and learned not to complain and just sleep at every available opportunity until I married and was pregnant with my first child, who I lost at 30 weeks, more test were run and 3 months later a diagnosis of lupus was presented along with my discharge papers and a request to vacate my house within two weeks...and finding out I was again pregnant(obviously not planned!!). This time I had a good pregnancy well cared for by [place]... and have a stunning but grumpy 15yr old daughter... I then moved back to Newcastle and have had a not bad set of GPs... they don’t always understand but are always willing to listen and do what they can, I’m being treated at [place] hospital and have participated in many trials... I’m currently in the pre licence for belimulab, which has helped as I have been off work now for a year and am now going back to uni in September as a mature student... my consultants have been outstanding Dr [name] and before her Dr [name] and my Lupus nurse [name] is just so knowledgeable and a fantastic person, I know I sound like I’m gushing, but I’m just grateful for getting some quality of life back.. Yes I still take plaqunil, methotexate, diclofenac and prednisolone.... but it’s not so dark anymore... I’ve got my 40th next year and I intend to celebrate in style because I had my doubts about getting there!!

My discharge was due to my diagnosis... I was unfit for duty mainly due to my Reynaud’s as I was unable to go abroad for duty so I was discharged within days with no support, although my ex husband was fantastic.

I have worked full time up until 18 months ago and have always concealed my illness from my employer, if I’ve needed time off I had always taken holiday, an employer always takes everything at face value, if you have a visible disability it’s easy to accept and by law you have to make allowances but for a chronic illness that flares, employment law does not take this into account so your rights are not protected. It was difficult enough to get the benefits agency to give me sick pay after my work’s sick pay ran out and after 4 attempts at applying for DLA and numerous medicals and asked if I was telling the truth, it’s quite frustrating. This week I can walk really well and have even been swimming and doing some light weights in the gym as advised to keep muscle strength, but I’m scared of being called a benefit cheat if I go out, but on the other hand next week I may be stuck in my bedroom relying on a cheery teen for tea...

Minhal's Story

I was told I had lupus 15 years ago. I had not been feeling well for a few weeks (extremely tired, swollen ankles and a facial rash - which wasn't the butterfly rash that I always hear about, this was more like a viral rash) and I was finding going to work a struggle. A visit to my then GP proved pointless as he attributed my swollen ankles to some kind of strain. I was admitted to hospital as an emergency a week later after collapsing at home. It took a further 6 months before I was diagnosed with SLE and class 5 lupus nephritis). I have suffered many years of flares (mostly involving my kidneys) and I have also suffered hearing loss. My latest flare started last April (with Bells palsy) and although I have almost completely regained movement in my face, the pain continues. I am under a renal specialist and I have never seen a rheumatologist or had a lupus nurse. I attend a renal clinic and the consultants are very helpful with the renal side of things but I have found that I cannot get any support with any of the other symptoms that I suffer. I believe I have suffered nerve damage (because of the shooting pains that I have constantly in my head, face, neck, back and ears) one side of my face has spasms constantly and my eye and lip twitch continuously (nerve conduction studies were negative). I have pain in my knees and calves which affect my mobility. I also suffer pain in both my wrists and fingers as well pain in my hips and my energy levels are zero. Because the kidney function tests remain stable (for which I am grateful) and my blood tests say I am not having a flare, my pain has been ignored and I have been told I am suffering depression. I agreed to see a mental health specialist and she said that my depression was reactive (because of the lack of support for my illness). I worry all the time that they are going to miss something because the renal disease was only diagnosed through a biopsy as my blood results were misleading and even in the early days when I was hospitalised for almost 18 months my blood results were never reliable. To add to this, I feel there is no follow up. Each time I attend the clinic I see a different consultant who wants to give me HIS opinion rather than reading my notes and getting the facts. This means that if i see a consultant and he decides to pursue a line of treatment, the next time I go to clinic I will see someone else who will then decide to change the treatment. I feel like my life has spiralled out of my control in the past few years and this has made me frightened and withdrawn. My new GP is supportive but he can only help me so much as he is not a specialist. All he can do is refer me back to the clinic where I feel like I am being fobbed off. I have broken down in tears in clinic many times this year just out of sheer frustration at not being heard. I have never had any support or counselling to help me come to terms with this life changing illness (I search the web which but seeing all the possible symptoms can be really scary). I am currently taking prednisolone, losartan, atorvastatin, aspirin (previous pulmonary embolism), calcium and vit D, planquenil, fluoxetine, amitriptyline and eye gel. my weight has crept up since being on this medication and it doesn't help that this is the first thing that is pointed out to me but no help is offered. It’s not as simple as just popping down the gym. I feel I have been left to flounder on this medication and my pain is not properly controlled.
I think that when you are diagnosed with an illness that has such a major impact on your life and is going to be with you for a long time, you and your family should be offered counselling and have a point of contact you can turn to with your worries in between appointments.

Lily's Story

The medical profession are an enigma! I have a good GP in my local practice, but it's really hard to see him. I see different GPs all the time, some of whom have no real grasp on what SLE is. My rheumatologist on the whole seems more interested in me losing weight than in discussing my ever increasing arthralgia. My dermatologists are good, and understanding about the skin side of things. I went to Bath recently to the [place], where I foolishly thought some kind of miracle drug may be offered, or at least some new information. To say I was disappointed when nothing new was forthcoming, is an understatement.

Jigsaw

Alice's Story

I was diagnosed with a number of rheumatic illnesses before I was diagnosed with lupus about 15 years ago, since then, it has been a total roller-coaster of treatment, about four to five years into my diagnosis, my rheumy retired and I was allocated another one, that's when everything started going downhill.
My new rheumy could not get his act together, my blood tests kept getting lost or he didn't bother doing any, eventually 3 years ago a result from an ANA test came back border-line on the positive side, and told me that I was cured, ha! So all my medication was stopped.
At the same time as my rheumy changing, I had to move house because of my decreasing mobility, had to get a new GP, they did not understand a thing about lupus. every time I went to them with a new or persistent symptom, they would just say it was the lupus and there was nothing they could do about it instead of investigating, take my thyroid for instance, it took 3 years for them to refer me to a specialist, had to have half of it taken out because it was so badly swollen that it was strangling slowly and my oxygen level was so low that they had to oxygenate me for 48 hours. I am almost positive that I should be on thyroxin, but hey, who cares!!

I have had to fight long and hard for the doctors to give me my diagnosis back so that I can go back on my medication. Thankfully now, I think I might have bagged a sympathetic rheumy, he has given me a steroid injection and said that if it works, he will put me back on plaquenil, the steroid injection did work, sadly, it has now worn off but going back to the rheumy next week. What really hurts more than anything else, it is how much of a none person the medical profession can make you feel. I have been struck off the register of 2 GPs surgeries because of my insistence for treatment and a second opinion.

Jigsaw

Ava's Story

I don't have any support and I think it is the fact that I started asking the question How can you medical people just accept the fact that one rheumatologist say that I am cured of an incurable illness based on the result of one blood test which isn't even negative? Also, I kept asking for a different rheumy, I think in the end they just got so fed up of me that they changed the rheumy to shut me up. I am so glad they did though, I went to the new rheumy today and he has put me back on plaquenil, given me another steroid injection to give the tablets chance to work and obviously my diagnosis back. He says that the Lupus is active but only mildly, I'd hate to have it bad, lol, he is also sending me to the physio to see if they can help. I forgot to tell you that while all this was happening, the G.P. sent me to the psychiatrist because he said it was all in my head, the psychiatrist said there was nothing wrong with me apart from being in extreme pain.

Jigsaw

Amelia's Story

First of all, what a great topic! I had been thinking that it was only me who has had a nightmare trying to get diagnosed, treated and finding information, but it seems like I'm not. It's a strange feeling, sad almost, that this seems to be a common theme, but it really does help to know that others are going through similar things to me.
My first GP kept telling me I was getting growing pains, migraines, anaemia, eczema, stress (what does an 11 year old have to be stressed about?), but these weren't connected and I shouldn't worry about them. Eventually it was put down to a virus and I felt as though I was wasting my time going. The last time I saw him before we moved practices I had a discoid type rash on my back that exactly followed the line of the tops I'd been wearing at the time in the middle of summer. I got fobbed off again, given some E45 and that was it.
We moved practices shortly after that and just before I had my first real flare. My GP there started off wonderfully and tested me for SLE very quickly but soon lost interest when all of my bloods kept coming back normal. She kept telling me I was stressed. I switched GPs within the practice and I really haven't regretted it considering that this one seems to be the only GP who has ever believed me. She told me recently that she suspected SLE the very first time I saw her which was a full 2 years before diagnosis. She will admit that she doesn't know a lot about it but has always been willing to go away and check, she's not afraid to admit she doesn't know what more she can do and always listens to what I've got to say, even if it is a pile of crap. She really has been a great support and I can only wish that every GP will be half as good as she's been.
Consultants are another story. My first rheumatologist was awful, didn't speak to me, didn't listen to me and didn't really do a lot for me. She discharged me twice, first time saying that I was postviral, the second after telling me I had a butterfly rash, was photosensitive and treated me for Raynaud's. She told me that I'd be back to normal if I started to swim, which I did, and it only made me worse. My current rheumatologist is far better than that and he actually has time to listen to me and, more importantly, answer those questions that no one else can.
I've also had a pretty bad experience with a gastroenterologist which is along the lines of not being believed. It got so bad that on my first appointment with him I sat in protest for over an hour to try and get him to see things from my perspective. The one thing I will say about him was that he was the only one before diagnosis who thought I had the start of a connective tissue disease, so he must have eventually believed me.

The only people hospital related, apart from my rheumatologist, who has treated me as a person and not a list of symptoms was the nurse who inserted my pH probe and my dietician. Both are the only ones who have had time to talk about things other than what's going on with me physically and that really did make all the difference. Sometimes it's nice to be talked to as a person and not a patient, something which I keep telling my medical student friends.

What happened with me again seems to be repeated a lot here. My bloods were always at the high end of normal or borderline, apart from at the very first flare. I kept going back to my GP saying that I was sore but everything was coming back borderline, so stress kept being thrown about a lot. It also didn't help that I hadn't thought to take photos of rashes, mouth ulcers and swelling until it got really bad as they never seemed to be there when I saw a doctor. I was told quite a lot at the start 'well I don't see any rashes now, so how do I know you're not just thinking they're there?'
The gastorent was a similar sort of thing, but a little more full-on. I've got acid and non acid reflux and it was so bad at one point I mistakenly called it vomiting, but I wasn't losing much weight with it, so he thought I was either making it up and not really refluxing, I was making out to be worse than what it really was, or I was making myself sick. I've also had to take a quite a lot of time off uni, which made him think that I was putting everything on to get out of exams and life in general. He told me to go on antidepressants and to get over it really.
The next appointment with him was ok. It was in January, first thing in the morning so he saw the Raynaud's in action for himself, then he believed me. And I guess it helped that at the time I was planning to go privately to my now rheumatologist and they know each other. It was then he did the whole 'early stages of a connective tissue disease' thing.
But saying all of that, I do think it's important, and only fair, to mention that I have had some amazing people working with me.

Esme's Story

My experience of the medical profession has been diverse over the past 20 yrs that I've had lupus.
Prior to diagnosis my GP got fed up with me turning up with such a variety of different physical problems and he decided I was a neurotic middle aged woman and told me so! He said he would refuse to treat me unless I saw a psychiatrist.

Meanwhile I was seeing a chiropractor for a back injury and he wondered if I had lupus because he could see my body had signs of an auto-immune problem. I had swollen joints, muscle pain and stiffness, skin rashes, major fatigue, malar rash, mouth ulcers, Raynauds symptoms, hair loss, headaches, memory problems, dry eyes, balance problems, fevers and had become very sun sensitive. He suggested I see a rheumatologist privately, rather than wait for an NHS appointment. He wrote the referral, which side stepped my GP of course, and off I went to the rheumatologist.
The rheumatologist actually took me seriously, unlike my GP. He was sure I had an auto-immune problem and wrote to my GP requesting blood tests. My GP got the tests done, but when they came back negative he once again started telling me it was all in my mind.
So I went for a psychiatric assessment next!

The psychiatrist turned out to know the rheumatologist really well. So although I was then diagnosed with bipolar disorder, the psychiatrist wrote to my GP and went to talk to him face to face about my case, because he too was pretty sure I had an auto-immune disease.
Finally my GP backed down - it's amazing what a difference it makes when a consultant sticks up for you - GPs have the power to refuse to make referrals and block you from getting the help you need, just because they've written you off as 'neurotic woman'.
The rheumatologist and psychiatrist contacted each other to get to the bottom of what was going on with my health.

Within a few months it was obvious to them both that I had lupus and I was put on hydroxichloroquine. Unfortunately I turned out to be allergic to this drug, but I was quickly changed to azathioprine, as my brain was becoming very confused and I was having absences, which really scared me as my brother had died from epilepsy.

Although it cost everything I could afford, it was worth every penny to see my rheumatologist privately, rather than brief NHS clinic contact. He took any new symptoms seriously and always investigated them - he realised I wasn't neurotic, just ill!

I then had a very bad experience with a neurologist, who gave me an MRI and EEG to find out what was going on with my brain. The EEG showed the blood supply to my left temporal lobe wasn't normal - I also had vascular inflammation elsewhere in my body, so this was no surprise, but I suddenly tipped into major depression due to an event in my life at that point and I attempted suicide. The neurologist said I was 'mad' and told me not to come back. You can get very fed up with being told by doctors that you're 'mad'! Especially as I was trying very hard to hold down a highly demanding paid job, maintain voluntary jobs and look after my family.
Azathioprine has been a life saver for me and my GP now respects me and says he knows now that when I ask for a referral to a specialist then I really need one. Our relationship is very good these days. So good in fact that my GP fought for me to get special funding for private surgery, when the local NHS didn't have the equipment to carry out the procedure I needed for a lupus related problem.

Once my GP was on side everything changed for the better and I now have wonderful surgeons and other specialists who see me when I feel I need to see them.
I also have a psychiatrist who's really clued up about lupus and has treated lupus patients in other parts of the UK. He thinks it's most likely that both the bipolar and the psychosis I've developed are being caused by lupus. So I finally have joined up health care and a combination of lupus meds and anything I need from other specialties.

It is definitely easier to manage living with lupus now I finally have supportive health professionals. I know they will at least listen and not dismiss me when I turn up struggling to manage some new and strange symptom.
It also means that when I go to hospital for what may be, or may not be, unrelated health problems professionals always consider whether the latest issue could be yet another manifestation of lupus.
This was very useful when I turned up at A&E with green and purple eyes and agonising pain in them. As soon as I mentioned I had lupus the eye specialist immediately realised my immune system was attcking my eyes causing scleritis. So the treatment was to get my immune system back under control. This worked dramatically well and because my hospital file now states I have lupus there was no argument, I just got the right care immediately.

But the legacy of not being believed by doctors for so long means that I self manage my lupus quite well. I usually know how to adjust my medication or my daily life to cope with a flare up. I can ask my GP to prescribe for the recurring episodes of scleritis I now get and for my gastric problems and many other lupus issues without even having to go to the surgery. My psychiatrist allows me to have medication on standby at home to use as and when I become psychotic during a lupus flare. The sooner a lupus problem is treated the easier it is to get it under control, so not having to wait for medical appointments means I can knock lots of problems on the head before they get out of control.

I really value the trust my doctors put in me to self manage and I'm able to see them whenever I need too or just ring or email them for advice. This gives me confidence that I am in control of my life and the lupus and lupus is not in control of me.

University of Hull | School of Social Sciences | Transitions to Illness