Uncertainty

Lupus & Identity

Lupus and Identity

In the three previous topics, many people wrote about the changes they felt they had to make in the course of their illness, whilst some also explored the various losses that lupus can inflict on people - partners, husbands, jobs, friends etc. not to mention their health and well-being.

We wondered how these issues affected people’s sense of self – that is, how lupus actually affects how people think, and feel about, themselves.

We asked people to think about what lupus, and all its implications, meant for their sense of whom and what they are – what it means for, and how it impacts upon, their personal identity.

Niki

...My mum is very understanding but she lives 3 hrs away...

Gabi

...do I just accept this is the way life has to be?...

Esme

...I trust to God to get me through this difficult time...

Nat

...I have good days and bad days...

Naomi

...3 Years post diagnosis, I have my sense of self and identity back...

Anna

...It is core to everything I do and everything I am capable of doing...

Barbara

...Any "get up and go" that I have, has "got up and gone" by early evening...

Lily

...I can't go out tonight as I feel too exhausted...

Heidi

...The head Registrar took up my case and appointed a leading team to support me...

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Imogen

...I was finally diagnosed with a milder form of lupus...

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Jo

...I am very fortunate in the support I do have - medically, professionally and personally...

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Niki's Story

Lupus has changed my life, and me. I've coped well, I think, with the transition from being very fit and active to being much more sedentary. Feeling more or less constantly tired is, however, a real struggle for me. I want to give myself a shake and get out there doing stuff, and sometimes I can manage a cycle or a swim, but mostly, I feel too exhausted. I hate feeling like that. I see myself as 'one of those people who I'd previously want to give a kick up the bottom to' and I don't like it!
At times, I have symptoms and think that they are all in my head; I'm terrified that 'because I have a chronic condition I will think and behave like I have a chronic condition'. Mind over matter....but that doesn't always work now!

My other main issue is weight gain, through a combination of overeating (steroids) and lack of exercise. I was never super slim, but I was always well toned and comfortable with my body. Now my self esteem is not so good, and I lack confidence in my relationship with my husband. I'm not sure how to address this but perhaps by posting here it will help me think things through. My hubby isn't one for talking about things - he's the strong silent type, but our relationship is suffering - with no intimacy, and I so dearly miss and crave this. I'm scared that if I talk about it I'll find out something that I don't want to hear - like he doesn't find me attractive or no longer loves me. Whilst these are probably irrational fears, they're real for me. I hope to address this soon. I must, for my own health's sake - the stress won't help my lupus!

I think we do have control over our bodies, but when you are going through the transition to illness it takes time to get to grips with it. Prior to being ill, I'd say I knew my body well, having been very fit, and could push my body without any real consequences, other than the odd injury.
Now, though, I have to try to coax my body to do things, and make sure that when I take exercise, for example, very carefully. I'm learning to tune into a different body in so many ways.
With lupus, I am learning that it is important to not push myself too far, as it can lead to a return of symptoms, even if this isn't a 'flare'.

Friends and family do have a role to play in how I fair on an emotional level and this can in turn have an impact physically. I think I have been mostly lucky that friends and family care, but do not fuss too much. For me, if I was offered too much sympathy I think it could have a detrimental impact on my outlook and ability to cope with the illness. On the other hand, if a friend invites me out and I have to turn them down due to how I feel, I am grateful for their understanding and the knowledge that my declinature won't put them off asking me again.
A friend asked me if I thought that my previous very active lifestyle - sport, work etc made it a bit non-stop - might have contributed to me getting lupus.
All I can say is that when I was fit and active, I felt very very well. I never picked up bugs or colds (maybe that was lupus and I never knew it - my immune system already being overactive).
I think the combination of my father dying and the other stresses that came along at that time triggered the lupus to show its head, but I believe it was probably lurking before that. Perhaps without the stress, if my life just went on all 'ticketyboo', then it would never have come up to the surface. I'll never know I guess!

SLE like other chronic illnesses, I believe, can strip the heart right out of you and change you into something that you don't recognise in the mirror anymore.
Yes, after 4 years of being diagnosed I'm still in mourning for the 'girl' I once was, although I've accepted the illness isn't going anywhere and I've never had any beef with God - 'why not me?'- I get frustrated because I don't understand it and the doctors don't have all the answers - how can a flare not show itself clinically? Am I going mad???
Some of what I've written below is just pure fact and the rest is based on how I feel about 75% of the time as my better days are getting fewer. When my energy level is up I feel a lot more positive and start to make changes but as soon as it drops I end up back at square 1.
Physical changes: 4 stone weight gain (due to stopping smoking to improve my health, steroids, lack of exercise and my love of chocolate). Buffalo hump at base of neck due to steroids.
Adjectives I'd use to describe me

PAST/PRESENT
slim/ very fat
attractive /unattractive
sexy/ frump
mentally quick/ mentally slow
funny/ a bit depressing
sociable/ unsociable
successful/ failure
energetic/ tired
motivated/ unmotivated
proud of myself/ ashamed
in control /not in control
content /ok
no guilt/ guilty (re: kids)
liked pressure/ hate pressure
a somebody/ a nobody

Failure, ashamed and guilty are biggies for me -
I'm separated because my husband didn't understand the illness so wasn't supportive at all (I asked him to leave as part of my de-stress your life campaign)= failed marriage. I haven't managed to overcome my illness, remain positive and return to work - I'm not a martyr but a failure.
I'm on incapacity benefit and don't foresee a return to any form of career that includes pressure/stress or quick thinking and I'm on the list for a council property. I'm obese and my son has just started saying that he doesn't want a 'fat' mummy anymore = ashamed. (Have started a diet AGAIN!)

I have two fairly young children aged 5 and 8 who have suffered more than me really due to the separation and the fact that mummy doesn't have the energy or isn't physically capable to do everything they/I would like to do. And I can't provide for them very well financially anymore = guilty.

Socialising is a BIG effort, not only do I worry about what to wear to try to cover my bulges but also what to say. I avoid social interaction with people who I don't know well because I hate sounding like an idiot when I word search or say the wrong word or am just slow. My memory has been affected and it takes time for me to retrieve the info. I'd like to wear a badge saying 'I'm not stupid, I'm ill' but that may seem like I'm attention seeking rather than just stating a fact - we Brits should still just grin and bear it don't you know.

I've informed my friends whose children go to the same schools as mine that if I just pick up the kids and leave ,or, don't join the mums for a chat, that it's not because of them in anyway but because I'm not feeling well.

My actual age is 46 but mentally I feel 28 and physically I feel 80 (my mum is 73 and she's far more active with the ability to do so much more than me.)This in itself leads to lots of mixed emotions.
I don't know who I am anymore as an individual, but I do know that being a mum is the only thing that is keeping me going otherwise I'd just eat, sleep, read and watch TV.

Yes, I am in mourning for the 'old' me and I can't seem to snap myself out of it eventhough I know I should move on - it's been 4 years. I've given up so much to this illness and I don't want people who knew me before to see me now because they wouldn't understand. I don't even want to go back to Turkey because I miss it so much - I don't want to be reminded.
I get a lot of medical support and see a psychiatrist every 3 months to check my meds. I've been on a couple of courses that have helped a lot. One was run by the Community Health Psychologist and the other was the Expert Patient Programme (EPP). The best thing about both courses was that it allowed us (the chronically ill patients) to discuss our illnesses and all the baggage that comes with them. We laughed, cried and helped each other. I still see the EPP girls every 3 weeks for a coffee if I'm up to it. You should definitely promote the EPP if you can.

Am I alone in all this? It feels like it because I'm separated. My mum is very understanding but she lives 3 hrs away, although she'd come if ever I needed her. My sister is 10 mins away but she has young children and a very active life, again she'd help if I asked. Basically I just don't ask because I don't want to wear out my imaginary emergency help vouchers - I could get worse. I didn't grow up in this area so I don't have a strong friendship base here but a couple of the mums at school have helped me with the kids when I've had appointments.

Everyone has their own life to live, with their own problems, they really don't need to have to worry about me too, especially as I'm not dying, just tired etc. A chronic illness becomes very boring for those suffering from it and for those who come into contact with it. I've found that it's only a fellow sufferer who truly understands or can empathise.

Unfortunately, a few of my friends know people with Lupus and it seems that all of the lupus sufferers they know are at work and doing 'fine', whereas I'm not, so I've been made to feel that I'm weak or playing the system. Friends and family have also put symptoms down to age and say things like 'everybody feels that way',

Gabi's Story

I’m single and have been since my divorce 7 years ago and live on my own with a 15yr old daughter, I have managed to work full time up until 18 months ago and due to stress (I was a hotel manager). I had a major flare up and I have to admit this has been the loneliest 18 months of my life, I have a good supportive family but I avoided relationships like the plague as I didn’t want to involve anyone in my illness... I was really in denial!!... I’m coming out of this period and due to start university in September and have found ways to cope with exam stress but I still feel like less of the 39yr old woman than I want to be... do I just accept this is the way life has to be? or go kicking and screaming all the way?... wow first time I’ve said any of this... :)

Esme's Story

I was a 38 yr old mum, slim and very fit when I suddenly developed lupus on holiday in Malaysia, along with a severe dose of traveller's tummy. But looking back I'm not surprised that I developed a disease where my body attacks itself. Throughout my childhood I suffered extensive abuse at home and at school. My mum didn't want a girl and throughout her life she continued to tell me I should never have been born and that having me had ruined her life.
So I was physically fit, but mentally destroyed inside, with very low self esteem and constantly under verbal attack within my family. Hardly surprising then that my immune system eventually joined in the attack.
At first lupus took over my life somewhat because it was uncontrolled, but I continued to play sports and do everything else as much as normal as possible, given some days my joints were so swollen I could hardly move and my speech, memory and balance were affected and I was having absences. I was determined from the start that lupus wasn't going to beat me.
Once I was put on azathioprine life improved no end. I still have regular flare ups and the fatigue can be very depressing at times, but I've stuck to my decision not to let lupus be my identity or run my life. Most people who know me at work have no idea that I have lupus, they know me for who I am and what I do.

Over the last 3 yrs I've had surgery a number of times for skin cancers, caused the doctors think by long term azathioprine use. Cancers on my face have challenged my identity, as did losing part of my eye to cancer, but whenever I've withdrawn from azathioprine lupus has returned with a vengeance. Plastic surgeons are wonderful and my face looks fine now more or less.
What’s helped me keep an identity separate from lupus has been becoming a Christian 3yrs ago in the midst of cancer surgery - a wonderful nurse offered to pray for me and the healing that followed amazed the doctors. Now I know that whatever I look like outwardly and whatever lupus does, I am accepted in God's eyes and loved and my Christian friends love me and respect me for who I am.

This year lupus has been causing psychosis when it flares up and that's been very scary. That's something I still have to get to grips with and with the help of a very caring psychiatrist and mental health nurse I'm sure we'll work out how best to manage the psychosis, but it hasn't changed who I see myself as and no-one sees me as 'mad'.
My husband, now grown up kids and my friends have been brilliant and life continues as usual, with the odd short break while i take time out now and then during a lupus flare with a psychotic episode.

I trust to God to get me through this difficult time, like all the other difficulties in life, and He never lets me down. I'm fortunate to have friends praying for me too and they still love me and I can still work part-time and still go out on the streets to help the homeless and do other outreach work that I enjoy. Life is good because I'm now loved and accepted for who I am and it doesn't matter if I have lupus or anything else.

Nat's Story

I was diagnosed with SLE and APS 14 months ago and believe that I had the symptoms for about 2 years before that. I went from being very active cycling about 100 miles a week to absolutely nothing, because of the constant aching and generally not feeling like I wanted to do anything. It’s taken me the last 12 months to pull myself round and realise that I can still do the things I used to do but I cant do them to the intensity or the frequency I once could, I’ve found that the best way is to listen to what my body is telling you and then act on it, if not and I keep going it takes me days to recover from a 20 mile bike ride.

I’m currently training to do a 100mile road race in the new year, I have good days and bad days, especially if I’ve been out riding in the sun, they aches and pains the day after are generally horrific. However I am proud to say that in the last 14 months since being diagnosed I’ve only had 2 days off.

I think it comes down to your state of mind and how much time you’re willing to put into understanding the illness, if you understand something you can make adjustments to your lifestyle and still enjoy the things you always have.

Naomi's Story

I’m quite anxious about doing this post although I know it will be quite cathartic if I do.
The effect of lupus on my identity has been the most difficult and painful aspect to come to terms with.
Prior to being diagnosed I held a senior nursing post and would have described myself as confident, independent, extrovert, hardworking and dynamic. I was good at my job, loved working in a caring, therapeutic role and derived a lot of self-esteem from my job.
After an unhappy childhood and rebellious teenage years, I went into nursing at 18 and for the first time in my life I felt I was good at something and that I fitted in.
For 22 years I worked and studied hard and climbed the career ladder. My job gave me trust wide responsibilities and I was involved in teaching at a national level.
Although I had symptoms for 15 years before I was diagnosed, they didn’t affect my lifestyle until 4 years before I was diagnosed and 3 years before I had to leave nursing.
During those 3 years, I had repeated episodes of sick leave. As I had no "official diagnosis" but was off sick with non-specific symptoms, I was given no support at all by the organisation I worked for. My Boss bullied me and harassed me at home whilst i was sick. When I returned to work I was disciplined over my "appalling" sickness record.
After one particularly awful meeting with my boss and the HR officer, I ended up in floods of tears to coldly be told, pull yourself together you have to teach basic life support in 5 mins.
Eventually I left that post as the stress of the bullying was making me more sick. I worked part-time on the nurse bank for the next 3 years, gradually reducing my hours until I couldn't even manage 2 four-hour shifts a week. Because I left of my own accord and had worked so few weekly hours the past 2 years, I was not entitled to incapacity benefit, income support, or my occupational pension.
When I was diagnosed with Lupus, I realised I would never be able to return to nursing and on top of that the pain and immobility meant, I couldn’t do simple everyday tasks for myself or children.
Thanks to immobility, steroids and depression I also put on weight. The dynamic, extrovert, independent mum and professional, had turned into a fat, immobile wreck who was totally dependent on her husband of one year.

My entire life plan had come to an end and I felt that I was useless, worthless, ugly and a failure and that I was a burden to everyone. I was ashamed and didn't want anyone who had known me before to see what I had become. I had to go through a bereavement process, grieving for my old self....It was long, tough and arduous.

The first light at the end of the tunnel was going to university, as I was achieving something positive, albeit a struggle. I also met new friends who liked me as I was and would come to me for advice or emotional support as they noticed I had a caring nature. My course faculty have also been amazingly supportive.

As I got stronger emotionally and my Lupus became more controlled, I have been able to increase my mobility, start exercising, lose some weight and have seen the old Naomi re-emerge, although wiser and slightly different. I realised that my lifestyle could be adapted to help manage my Lupus and again, this proactive approach helped renew my sense of self.

3 Years post diagnosis, I have my sense of self and identity back and have adapted my lifestyle and future goals to include managing my Lupus. Lupus is part of me but not all of me and this experience has taught me valuable lessons.My new life is different to my old one and I actually prefer it now; I am quieter, calmer and more spiritual. I know myself well and have an inner peace. I no longer crave my old job but see myself taking my experience as a nurse and a patient with me into a future where I can care for people in an emotional rather than physical way.

As a nurse I had always taken the "caring, emotional" side of my role very seriously. I would often work late in order to spend time with patients and/or their loved ones to make sure they had a good understanding of their diagnosis and treatment plan and discuss options for further support and future lifestyle.

When I was dealt with, with such a lack of compassion and empathy myself, it felt like the ultimate betrayal of all I had given over the last 22 years.

However I must stress that this treatment was by my boss and not the whole of the NHS. I do know of many other cases in which the NHS has managed its workers harshly regarding sick leave. It really is a no-diagnosis no help situation.

However I also know of many employees who had lots of support when their diagnosis was clear cut. What happens seems to be very much determined by having a tangible diagnosis. It is also very much determined by the attitude of one's boss. There were grievance and anti-bullying policies that I could have actioned but when you are so ill you just don’t have the strength.
As a patient I have been treated with far more empathy.

Anna's Story

Am I defined by my illness...? I would have to say that my way of life compared to life before SLE/HS was so very different, that yes, my lifestyle is defined by my illness, and since lifestyle is such a major part of self, then yes, it does define me.
What would I do if I woke up tomorrow and I was completely well...wow, the possibilities are similar to those that people dream of when they hope their 6 numbers come up. I would change my career path. I would definitely enter the political arena, in what form I don't know. All the DIY would finally get done in the house. I would have more babies, would play games and sports with my 12 year old. I could be spontaneous in my choice of what to do in the evening; not the 'need to take it steady approach' I could go paint-balling, mountain biking...the list is endless.
I would like to be an adrenaline junkie, I would like to camp out, go to festivals, embrace my forties with excitement not dread.

To not be bored of my own self would be really something. How many Lupus sufferers are bored of the litany of symptoms, paranoid that everyone else is fed up of them, forging friendships online rather than the face to face commitment needed to maintain most friendships.

How does Lupus affect my sense of self? It is core to everything I do and everything I am capable of doing. It has stripped away dignity and replaced it with humility, spontaneity is replaced with thoughtfulness and consideration. I am a different person to the person I would have been, there is no doubt about that, but I sort of like this person I have become over the past 12 years, my patience, my understanding of others and their difficulties, and the overwhelming love and protectiveness I get from my partner and my only child...and I was lucky to get him!

Barbara's Story

I have a context (SLE) on which to hang the negative aspects of myself. I have found the changes in my life style quite a challenge. I have had to change my job to stop split shifts, as evening work is nearly impossible now. Any "get up and go" that I have, has "got up and gone" by early evening!! The methotrexate has done wonders, especially for arthralgia, but has killed off my social life. I have a friendship group who like a few beers, and that's out for me on two counts-one, I can't do evenings, and two, I can't drink on the drugs. My work life has changed too. I have recently had to change to a four day week. I am lucky with my partner, as she is very understanding, as she has suffered from fibromyalgia for 15 years, and understands what I mean when I say I'm "lupus tired" not just tired. My skin bothers me, as does the awful weight gain. Fat and spotty doesn't do a great deal for a woman's self esteem. The Red Cross camouflage team were fabulous in terms of showing me how to use specialist make ups to hide the rashes, but that doesn't change how you feel on the inside. I live in Cornwall, and feel very lucky to be in such a beautiful County, but the UV in the summer is painful. I'm having a bit of an internal fight at present, and am trying to keep of the opinion, that I have lupus, IT doesn't have me.

Lily's Story

Keeping control of the Lupus for me, is about strength of mind, and always trying to keep a positive outlook. i.e. "I can't go out tonight as I feel too exhausted" becomes "I've had a good and fulfilling day today that has made me tired".

Uncertainty

Heidi's Story

From starting my young life as professional dancer (ballet/contemporary) training and working very long hours daily, to a year out partying hard with very little sleep, to becoming a mum with a stressful job whilst going through a breakdown in a long term relationship which lasted 4 years to final separation. This left me self analysing by way of mental torture, being extremely critical of myself and very down with the way I looked, the way I behaved, all of the wrong doing I had done or said over the years and with the loss of my father this lead to despair. Moving then in to a new relationship and new job, which although both joyous and exciting brought on the onset of extreme stress and a disease that attacked me from the outside in.

It is funny when you look back at it how things could have been different if I was aware of the early signs of this disease. For example, the prickly heat in the sun, Glandular fever repeatedly as a child and the miscarriages. How extreme stress over a long period of time can trigger the onset of any critical illness.

I did not know about SLE (Lupus) until I awoke from a coma following 5 days in intensive care fighting for my life with multiple organ failure.

I could be bitter about not receiving an earlier diagnosis, or being wrongly diagnosed, about no Doctor or Specialist following all of the symptoms as a whole, or several wasted hospital stays. However that will not solve anything and would only heighten the disease as to manage my illness is to manage the stress.

Life is for the taking and is to be cherished every day. We only have one chance at this (although for me I feel like I was lucky enough to have a second one) and so why waste it fighting people or organisations when good can come out of my experience.

Now I will dedicate the rest of my life trying to raise awareness of this illness, by trying to get to speak to Doctors and Consultants about this illness in the hope for earlier diagnosis, by helping anyone I can come to terms with this illness, all in the hope that no one else has to suffer the same fate that I did, or their families suffer the same trauma mine did

I don't know many people with Lupus and so find it hard to compare who I am with others who have this illness. I do however find it strange that I have always been a very self critical person. This started off with me analysing myself and years later then lead to me picking apart what I looked like, what I ate, how I acted, what I said and everything about me. I started pulling myself apart piece by piece stripping whatever self esteem I had left following years of abusive relationships.
To then come down with an illness where my immune system then started attacking every part of my body from the outside in, now looking back is not surprising. Despite from the outside having this determination to fight, and this get up and go attitude, inside my own head was a very different story, and not one many people got to view. Although I fought for everything I wanted and had, I then pulled myself apart emotionally in the evenings.

As far as early diagnosis is concerned. To understand Lupus is difficult due to it affecting other people in different ways.

I do however know that self critisism and stress is my trigger.

For me, my illness started with tiredness, mouth ulcers, my hair follicles got infected and around them my roots went black and hair fell out in patches. Then came the blistery spots on my skin. This is the same initial signs now of the illness flaring. My illness separates from here into a before diagnosis and an after diagnosis.

Before diagnosis - My hands and feet got affected with pain and swelling in the second joints and surrounding tendons and tissue. My hands and feet would claw last thing at night and first thing in the morning. After several months it then moved to my elbows and Knees, then later to my hips and shoulders, then spine and head (brain). It would rotate between these daily with no two days being the same. Two years later it then attacked my stomach, liver and spleen. At this time, they did not know what was wrong and as I had pain in my ribs as these organs became larger, they were pushing my ribs out. I went to see a chiropractor thinking my spine was misaligned. He then told me my organs were enlarged and there was nothing wrong with my spine.

For my stomach, at first, they thought I might have stomach ulcers and so sent me to hospital for tests. Much to say they found nothing, but when on a drip the pains stopped and they sent me home. Then every time I ate I would either be violently sick or would have to run to the toilet for it to come out the other end. Back in to hospital I went and once again when on a drip, no more sickness and no more pain. Another week this continued and by this time I was turning yellow with pain in my kidneys. My weight now down to 5.5st. Protein was appearing in my urine along with blood. Two days later I could not sleep as every time I lay down I felt like I was drowning with severe pains in the centre of my chest. Too scared to close my eyes in case I did not wake up (as I knew by this stage I was dying). After trying to get my GP out to see me and failing, I asked my husband to call an ambulance. They felt no pulse and my heart rate was through the roof. Two days later apparently I had two occasions where my heart failed and once in intensive care (luckily) the cardiologist diagnosed me with a pericarditis and pleurisy. My kidneys had failed, but I was placed on dialysis just in time to save them from long term damage. This is when I got my diagnosis for SLE (Lupus).

Since my diagnosis - The illness now starts the same with the tiredness, ulcers in the mouth, up my nose and in my hair. I get little blistery spots on my face. (This is my warning to take it easy and change what I am doing). If I do not listen to these body warnings then the Lupus now goes straight for my organs. Liver first, then spleen, then kidneys and thankfully have had help before it has progressed any further so far. Now my trick it so nip things in the bud as soon as the tiredness or blisters start.

For me, leading up to being in ICU I had completely lost faith in the medical profession. I had 2 specialists from two different locations both unwilling to look at all of my symptoms.
The first one was very dismissive of my illness with no real examination, and only gave me medication when I broke down in floods of tears after him telling me mine was a mild case of RA and that "you can't get RA in your back and so there is nothing wrong with your spine". After asking to see another specialist as I did not feel the first one was able to help me due to the repeated cancelling of appointments when I was very very ill, I then had to go to the back of the list and start again.

My second consultant (after many more months waiting) did examine me further and did look at the swelling in my knees and up my medication by 0.5mg per week. Did not however look at all of my symptoms. Even when all of the symptoms were exactly the same as the side effects of Methatrexate that I was taking, had protein in my urine and was a funny colour yellow. When my weight was so low that I could not afford to be sick any longer due to my body starting to shut down my organs and despite the Rheumy nurse agreeing there were things to be concerned about.

As for my GP clinic. They are about as much use as ..... well best not say. Even now, despite the critical incident and criticism they had from the Paramedic that took me to hospital, still will not do anything for me unless I now demand it. Their blood screening is so bad that I now have to get print outs of my blood result charts to monitor myself and take copies to my new specialist. There were a few Locum GP's leading up to my critical phase that helped me by sending me into hospital to the surgical ward or my phoning to hurry up my referrals for the Rheumatologist, but my main GPss will not prescribe anything without a letter from a specialist or will just send me away telling me they cannot do anything for me.

My only saving grace was the superb team of leading specialists that I got assigned to when in my final intake to A&E. The head Registrar took up my case and appointed a leading team to support me. He promised me one day at my bed that he would do everything in his power to get to the bottom of what was wrong, and thankfully he did. The cardiologist and his team saved my life, the head registrar and his team brought the team and my care package together and looked after my family, and my new specialist now keeps me alive and supports me well. If not for those I would not be here today. I owe them more than my life.

Uncertainty

Imogen's Story

I have just come across this project and wish I had done so sooner! Where do I start?? Well, I would like to say I think this is an admirable subject to view from a social work perspective, I guess I can say that with confidence now I am a "retired" social worker at the grand old age of 50 due to this unremitting disease! I have gone from a strong independent single parent who brought two sons up alone, trained from having no qualifications and completed 16 years in community social work. Looking back I was always having complications with my health starting with my pregnancies and this contributed to the breakdown of my marriage. I had a long period of remission, when I was training, but when I started work in a hospital I caught all the bugs going (hospitals are generally not the best places to be with a poor immune system!) and lupus reared its ugly head. I loved my job, and like most in the job, social work was a major part of my life. But I was off sick a lot and this affected how I was treated...the "caring" professions are not so caring when someone has a long term illness!! After many years of being told I was "neurotic" I was finally diagnosed with a milder form of lupus - although if this is the affect mild disease has my heart goes out to those with serious complications. I have had to retire on ill health grounds as I can no longer commit to certain day/hours of work. However, I am fortunate and do work from home flexibly to suit myself, tutoring - however it isn’t really where my heart is! I feel a "non person" now, with little identity, even less social life and altogether invisible really. That sounds negative and I guess I feel that way presently - as most people do in the midst of a flare which I am having right now. I have two great grown sons, due to be a gran next year and I should be delirious instead I am eager not to burden my sons with my misery although they are on the whole very understanding having grown up with me like this. I have little self esteem (I was never in short supply when well!) and my body image is appalling even more so that I have given up smoking and had to have intermittent steroids all of which add to my bulk which has never been slim! I want to be loved like anyone else, but feel that no one would understand my inability to be full of energy most of the time - and anyway it is hard to meet men when you need to plan for weeks for a night out in order to have the rest needed. I know I sound a moaning Minnie, and really I know there are many others who suffer with this horrid illness much more than myself, but it is the emotional consequences of this (and other) chronic illness that are the worse to bear, the lack of identity, isolation and loneliness that come with it. Roll on remission, that’s what I say...and good luck in hopefully raising awareness of the need for counselling, support and general understanding.

Uncertainty

Jo's Story

I was diagnosed with Systemic Lupus at the age of 18. I am now 34, nearly 35 and trying to have a baby. Lupus was a hideous shock to my teenage identity and prevented me from going to university at the time my friends did. I found a way through, and attended university a year later, subject to medication regimes, and slightly more socially boring activities than my friends. However, at the age of 21, my Lupus went into remission and for 8 years I had a 'normal' life - I travelled and worked, started a career in the Probation Service and had lots of great experiences.

At the age of 29 however, my Lupus returned very aggressively. I literally stopped being able to move and it was like a giant plug on my life was pulled. A significant relationship ended because of it, I had to move home to be nearer family to support me because of it, and I started a merry go round of regular blood tests, Doctors appointments and treatments.

For the past 5 years I have been on varying levels of steroids, autoimmune suppressants and different handfuls of medications to address Lupus and Raynauds symptoms - and of course the side effects of all the more invasive medications I have taken.

For the last 18 months, I had finally managed to reach a positive place in managing my condition, was declared in remission and indeed was given the green light to try for a baby - the Methotrexate well and truly now out of my system. I have been married for nearly two years and have continued to work nearly full time as a manager in the Probation Service. I do still consider Lupus in my life and remain mindful of my lifestyle choices and physical commitments, but to be honest, as the symptoms have disappeared, it has been more in the back, rather than the front of my mind. My one identity, and as described by others on this site and as lived for 8 years and the past 18 months therefore - is of someone who can be successful in all they wish to achieve. Who can work full time if they want, in a challenging yet rewarding role, be a wife, engaged friend and family member and ultimately become a mother.

Today however, my other identify has forced its way through. I couldn't go to work today as everything hurts, my joints are so painful I can't take on my own stairs let alone a physically demanding day of work. I am exhausted yet have just had a very relaxed weekend and last night slept for ten hours. I am tearful and feel unable to cope and manage my daily tasks. Today I am none of the things of my alter ego of a few weeks ago - and I have to say, for me, this is what really messes with my head.

Sometimes you are fine and great, other times you are not. Sometimes you can tell it’s on its way, other times it is out of the blue. The impact every time is that I feel I let everyone down; my colleagues, my family and ultimately myself. This goes against my personality as a reliable achiever - instead I too feel a failure. I have had counselling in the past to help me come to terms with these changes, and I can rationalise it when I have the energy and positive people around me. However, when you are literally grounded and in bed, dropped out of your own life, the demon thoughts start creeping in.

I realise reading the other posts, that I am very fortunate in the support I do have - medically, professionally and personally. My GP and the new hospital Lupus nurse have both spoken to me today and are already on the case, my work managers are understanding and are reviewing my application to move to half time hours and my husband and family are consistently supportive.
Such support helps me join my two identities together - however right now it doesn't take away the fear that this could yet again be a significant episode which will impact on the one identity I crave, which is to ultimately become a mother. I keep my poorly painful fingers crossed that this will be achieved somehow, but we will see.

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