Butterfly

The Transition To Illness

In this third thread, we were interested in how people with lupus think about and manage their lives in the context of the condition.

We were particularly keen to know how people managed the transition from a healthy to an ill person (we realised that, for many people, this is not a one off occasion, but a very gradual realisation, as various symptoms converge to become one diagnosis). We asked how the realisation of a chronic health condition affect people and their plans and expectations for the future?

People wrote about their experiences in the educational system, their work life, their personal and professional relationships, where their support (or lack of) comes, or came from, or anything else that they felt relevant.

Niamh

...it was clearly inescapable, so I just got on with it...

Rebecca

...it hasn’t really changed any of my goals in life...

Minhal

...I think I need a diagnosis in order to justify the decision to change my life...

Isla

...Now I'm going through denial- I don't need all this medication etc...

Clare

...I feel as though I have to work harder than anyone else to be as good...

Chloe

...All the time you feel you can't do something you never will...

Naomi

...Counselling, whilst helpful has a tendency to be generic...

Brooke

...Every day I still battle to deal with all the problems that lupus brings...

Violet

...There are a lot of changes that occur post-diagnosis...

Niki

...My colleagues have changed how they work with me...

Ruby

...people don't realise this and forget that and take it for granted...

Abi

...I don't think I had felt particularly well for over 10 years...

Butterfly

Phoebe

...I've spoken about my depression and extreme fatigue at university...

Butterfly

Fatima

...my family are the only ones who are really truly supportive...

Butterfly

Niamh's Story

It's hard to talk about a 'transition to illness' because I shall never be sure which issues in my early life were caused by my lupus (or other aspects of my mixed connective tissue disease) and which weren't. I always had difficulty eating and since leaving my parents' house twenty years ago I have been dirt poor most of the time (partly because I was a carer for my partner, who had leukaemia), so I've often had issues with malnutrition, and also problems with not being able to stay warm enough in winter. I guess because I'd already dealt with my partner's serious illness I was less intimidated by the thought of being ill, and I didn't go through any of that hysterical hand-wringing "I can't live with this!" emo drama.

Like most of the shit I've had to deal with in life, it was clearly inescapable, so I just got on with it. At first my main concern was staying fit long enough to provide for my partner's care needs. Now it's staying well enough to financially support my family and continue my work as a creative artist and political campaigner (mostly on issues unrelated to lupus). I am part of a strong local and international community of people who are very supportive, and I don't feel that things are unbalanced when I have to ask them for help with practical matters like shopping because I support many of them where mental health issues and disabilities are concerned and I help them with assorted work and creative projects - I'm confident that I more than pull my weight. I am continually saddened by the things I (as a former competition swimmer) am no longer able to do physically, but I don't dwell on it. I'm glad I had a good time in my youth enjoying the sex and drugs and rock n' roll that are more complicated for me now; there is practically nothing that was then within my means that I regret not having done. Now, as my health declines, I'm enjoying the new advantages that come from getting older, developing new insights and new ways of interacting with the world. The barriers placed in my way by clueless strangers (especially in academia) are frustrating, but having to deal with stupid people is an inevitable part of life no matter what one's circumstances. I hope that I can live a relatively useful life despite this and leave the world better than I found it, or at least slightly less screwed up than it would have been without me.

Rebecca's Story

The transition from a healthy to an unhealthy person was heard but I was so young. At 15 I kind of let me parents deal with everything and I often buried my head in the sand and still did things as normal like go out with my friends when really I should have been at home getting better. It took quite some time for me to accept the lupus and settle down into it. I met my now husband when I was 16 so I started to come to terms with it a lot with his support. I can’t deny I always had and have to consider lupus in any decisions I make but I have always had the attitude that it will not stop me doing anything I want to so it hasn’t really changed any of my goals in life. I had to have extra help in terms of school and university sometimes but I was determined to get there. Now running my own business means I can be flexible and rest on the days when I need to which is really helpful. My husband and I are planning on starting a family in the New Year and I think this is the first time my lupus has had a serious impact and I really need to consider everything before my pregnancy. I had a miscarriage three years ago so the risks unfortunately are there. I am just trying to get myself as fit and healthy as I can before my pregnancy and work with my consultant for the best possible outcome.

Minhal's Story

I have long suspected I have lupus but have (as ridiculous as it sounds) tried to get by/been in denial feeling too busy and having too many things to do to be ill. I'm 43 and was seen by a dermatologist about 5 years ago who said he thought I had the classic rash and referred me to the Lupus Clinic - I never followed up. I finally went to my GP a couple of weeks ago who sent me for various tests. The surgery called today to tell me that my blood tests show signs of SLE and I am now awaiting my appointment at the clinic. I feel like I am finally submitting and it is a huge relief - I have a stupidly busy life between being a single working mother with a demanding extended family. I've felt I don't have time to be ill. I've been very poorly over the years and often come home and fall into bed. I recently became aware that I couldn't ignore my ill spells and am finding it harder and harder to drag myself out of bed on poorly days and having what feel like permanent infections. For me having a bright red rash has also been hard to deal with, particularly in my working life and because I get stared at. I've felt lazy in the past - this will hopefully alleviate my guilt of not having the energy I would like. If SLE is confirmed I will make changes to my life as I can't carry on as I have been.

I think I need a diagnosis in order to justify the decision to change my life. It will have repercussions on other members of my family as I am the provider (I have one child of my own and inherited some more due to a family bereavement). It is likely we will have to move house, schools etc. Without the diagnosis I think I would make more minor changes as I am stressed.

Isla's Story

I was diagnosed with SLE just over a year ago. It was a relief in one sense. I'm 38, but had been walking etc like an unfit 90yr old since the birth of my child and death of my husband within 6mths of these events- which I do believe triggered the SLE. All my GPs failed to come up with an explanation- it was a training GP who finally got me referred at the same time I had taken some time off work for depression.

Now I'm going through denial- I don't need all this medication etc.

After initial diagnosis I finally had a reason to be crawling into bed as soon as I got home.
from then to now I feel less accepting of it!!

My biggest source of support has been my rheumatologist He's almost become like a GP - and my daughter however she is only 11 and i worry about the effects on her as I am a lone parent. Work at first was understanding but I do get the feeling now that they are watching my every move.
My sense of self? I was a mental health nurse who then had to come to terms with having depression herself. Now it’s taken a big leap to see myself as a person needing to attend a specialized clinic regularly. It’s given me permission to accept that I have limits which might be smaller than others. Its hard though as I still feel as though I don't have any excuses like say someone who has a terminal illness and who may have more justifiable reason to find life tough going. Does that make sense?

Clare's Story

I am always trying to work out how to manage life in the context of the illness! Not fantastically well is probably the answer, I find it difficult not to blame myself, not to think that I can make it better by working harder and pushing myself. I find it very difficult to be nice to myself and forgiving when I feel unwell. I miss the person that I was before the illness, and feel that I must be in some way responsible for the illness. When I have periods of being better I always believe that it will stay that way and find it devastating when things are worse. Basically coming to terms with the illness is very difficult, that said I guess I do manage, my stubbornness is a double edged sword that keeps me going, but stops me from accepting the illness!

For me, my sense of self and how I feel about myself is that I feel worthless and as if I am fundamentally bad inside, this is especially heightened when I am ill, when I am better I can gloss over these feelings. I feel as though I have to work harder than anyone else to be as good, at being a mum, a wife, a worker, and as such I know that I place huge demands on myself. I can't say that it is the lupus itself that makes me feel worthless and bad, it is a factor in it certainly, but the constant battle against it is wearing. Having an illness that is totally devastating at times, and yet which is not understood by those around me is hard to cope with, I think I am probably not alone in that I deny it to myself and others and pretend to be fine because it's easier than trying to explain. In short my sense of self is tattered. I am intrigued as to how you will be presenting your research, and impressed with how interested you are with our stories and experiences, and it is so interesting to read others responses as well.

Chloe's Story

I have been diagnosed with Lupus for at least 4 years. Since that time it has been a long and hard struggle to come to terms with. I was a Full time Primary Teacher and had been for the 14 years. I had to give up my career as it became clear that i was picking up all of the illness that the little ones brought into school plus it was taking me twice as long to get over than other members of staff. I was finding it more and more difficult to keep up with the amount of hours required for teaching. In the end it came to the point that i either had to go or be pushed by my employer. I am now working in a far lower paid job which requires less time I still am lucky enough to be able to keep a full time job this one does not need me to work on into the evening and at weekends. I have got to stick to the routine of going to bed at 9pm and if I go to bed later I will be trying to catch all week without the right amount of rest and measuring the amount of effort I put into each day I have been able to keep myself well in not having continual coughs and colds etc. Others around me have a hard time understanding that if I don’t sleep at 9pm at night I will not be able to work the following day. Friends and work mates can be like it is only one night go on but I will pay for it at some point.

The hard thing was to go from being a very active person to finding it hard to move around. I have always been overweight my whole life but I have been very active and not had problems walking and could spend all day wandering around the shops but almost overnight I found it hard to walk for long periods of time or any distance. It has really taken me a long time to manage to stop looking at what I can no longer do and start looking at what I can do and what I can do to help me a achieve some of the things I used to take for granted. I must say that my specialist has been particularly unhelpful in this area. All he sees is an overweight person and I am losing weight in the last 6 months I am up to 5 stones but he says that there is no more interventions as I am so overweight the only other medical intervention would be steroids and he will not use them with my current weight and so has told me that he is signing me off and so my GP is now my only port of call. She is very good but as she says I know more about Lupus than her.
The pain did get me down too in the beginning it is no more sorted as in pain relief but I feel now I have found ways to make things more bearable. I look at what I can do as a blessing and what I can’t do is a challenge and one that I will spend time looking at finding ways to enable me to do it or find another way of doing something similar. I am using a wheelchair in some situations now as I was missing out of visiting places as I could no longer walk or stand for long periods of time that has taken a while to except and there are days that I will really push myself to not use it and will end up either very frustrated with myself or in a lot of pain.

I think the overriding issue for me is that for a lot of people who know me family and friends because they cannot see what is happening to me 'I don’t look ill' they have or are having a hard time excepting that I need to adjust how I live and do things. That can be a really hard adjustment to make and at time even now I will do something or push myself to do something because family or friends do not get the fact that it is a problem for me and I will then also suffer for it. Rather than fighting or having to repeat that fact that I am not choosing to be a problem or hassle it is because of the Lupus.

You asked about my sense of self and how that has changed. On reading others comments, I came to realise that I have not got the same friends I had pre Lupus. In the beginning it was mainly my fault as I would shy away from invites to events and nights out as I did not want people to see me using a walking stick and when I was forced out of teaching I felt I had lost my identity as I was a Teacher and that was what I did and I no longer was part of their world. As most if not all of my friends were from the world of education either teachers/advisors or learning support assistants. Then as I became happier and found another role to do I started to accept the invites but they did not continue as they found it hard to see what i was now or perhaps I had just moved on. Who knows? The friends I have now have only known the Lupus me and I guess that makes it easier as I am not having to pretend to be someone I am not. Although I still have issues as I will go without my stick or wheel chair rather than admit I would find things easier with it. I feel like a burden when I am going out things don’t tend to happen as a spur of the moment as I need to plan for things. I am not the person I used to be but then again I don't think the person I have become is all that bad. There are things know that I value and take time about that in the past would not have been considered. Sometimes taking things at a slower pace enables me to see and experience things that I would miss if I was still living life in the fast lane.

Mark you that said this is all fine and dandy when I am in a good place and not feeling sorry for myself but I do have bad times too when I hate having Lupus and how it has completely put my life upside down. I hate having to be dependent on people when I have flair and the loss of my independence.

But as others have said who have posted on here you need to be strong emotionally and optimistic. All the time you feel you can't do something you never will. I have also learned not to use or think of the words could or should have as they can be really destructive. I do what I do when I can do it and when I want to do it there are no could have or should have.

Naomi's Story

Prior to diagnosis I held a senior nursing post but also had a 20 year history of fatigue, joint pains and what felt like viral illnesses. These would come and go lasting for about 3 months at a time. As I had a busy life, I put these episodes down to overdoing it and being run down.
As a critical care nurse, my concept of illness was very much set in "acute, life threatening conditions,". Hence, I didn’t believe I was ill, pushed myself to keep on working and failed to ask for proper investigation into my health problems.

3 years prior to my diagnosis, these episodes, increased in frequency and severity, causing me to have to reduce my working hours on several occasions. During this time I was bullied by my ex-boss and officially disciplined over my sickness record. After having my 3rd child I was simply too ill to return and chose to leave. I eventually was seen in my GP’s surgery by an ex-colleague of mine; shocked at the change in me and immediately referred me to Rheumatology.

The Rheumatologist took 20 minutes to reach a diagnosis; telling me I had Lupus and Sjogren’s syndrome and these had been ongoing for about 15 years. The nurse in me fired off a load of questions and understood the diagnosis and treatment and quickly researched everything there was to know. Sarah the person was in shock and fell apart. During the next two years I put on 8 stone due to steroids and immobility, could only walk 50m with a stick and needed with every day activities. My husband gave up work to look after me and we spent a very stressful 6 months sorting out benefits.

At that point I felt, useless, worthless, a failure and could have really have done with some psychological help and support but it just wasn't available. The adjustment from carer to patient was particularly painful as I was very fulfilled by my job. I totally withdrew from the world, not keeping in touch with friends or ex colleagues. I was like this for about a year; until my husband and I decided that we would like something positive to come out of this and applied to go to university.
This was a real turning point for me in accepting my illness, as I felt I could achieve something; albeit a long slow process due to fatigue, pain and brain fog. I made new friends who had only known me ill and liked me for what I was. This was great at bringing me into the world again and I could see that everyone had some problems. It helped put my sickness in perspective and my peers often turned to me for advice. This made me realise I had valuable life experience, which I could use to help others.

My university have been brilliant, with my faculty supporting me at every turn, going over and above the call of duty to keep me plodding on.

In the last year my disease has stabilised somewhat and I am in now control of it. I have adapted my lifestyle and do not to push myself too hard or far; but listen to my body’s needs. I eat a healthy diet, exercise gently, work within my limits depending on how I feel, meditate and go to bed early. I have lost 4 and a half stone and haven't needed my walking stick for a year. I also monitor my own bloods and am proactive about accessing medical help when I think I need it. I am back in touch with ex colleagues and friends and I no longer grieve for my old profession.
Lupus is part of my life, it can be difficult but it has taught me so many valuable lessons too. I like my lifestyle now; accept myself and would like to train as a counsellor.

In response to my post, you asked what sort of psychological support I felt people needed to aid with transition to illness. I have thought at length about this and what I am about to say I feel is applicable to all chronic disease suffers (irrespective of the diagnosis and even pre-diagnosis)
I think what is needed is someone who can pull all the threads together.

That is someone who understands the disease and its treatment and can explain it succinctly. Someone who can understand and advise on practical issues, such as working lives, the benefits system and how to access practical help. Finally, someone who can offer support and counselling to help people through the transition from health to illness. This need not necessarily come from the same person, but a charity or something which could offer a one-stop shop type system to cover all these issues would be brilliant.

In my experience the medical team seem to have little idea of the benefits system, or the time/training to address psychological support. Explaining chronic illness to the benefits system is frustrating to say the least as they want black and white answers. Negotiating ones way around the benefit system in the first place is something of a challenge and even those who work within it have a knowledge deficit.

Counselling, whilst helpful has a tendency to be generic; and again it is frustrating to have to explain your illness and its effects at length to your counsellor before any real help can be given. I was offered CBT and the therapist was completely geared up to addressing depression and anxiety in the well person and was unable to adapt to the wider context of someone with a chronic physical illness.

Brooke's Story

Postivity....positivity......positivity....that is what I live by now. It is what enables me to keep going day by day and stretch myself that little bit further on the path to regaining my life back as it used to be.
It’s been a very long difficult road. My diagnosis was confirmed when I suddenly had a brain haemorrhage (but it is thought that I had Lupus for many years which at last explained all the problems I had had that were always put down to stress and traumas. From then on it was hospital - almost continually for a year. Could not even feed myself at one stage - my husband and family had to do everything. From being a fitness fanatic - enjoying all outdoor activities and sports I was suddenly this person that could not leave the house and had to depend on everyone around me for assistance. The first year I actually could not even sum up my feelings or what was even happening as I was just too ill. There is like two years of my life that is just a gap - a lot of it I don’t even have memory of. I then spent 6 months in a wheelchair - It was at this time that feelings of frustration and bouts of depression started to set in. The mind was beginning to tell me I wanted to start doing things again but the body would not allow it. I am now into my third year and making huge huge steps towards becoming more like the person I used to be. I now have a part time job and am also attending yoga and Pilates classes as well as even some cycling.

Determination, being positive and setting targets help me to keep getting that step further. No matter how much pain I am in (and that’s still 70 per cent of the time), I never allow myself to think that I am not well - I continually tell myself I am ok - there is nothing wrong with me - and no matter how the fatigue still weighs me down I fight it with every ounce of strength and energy.
I am not only fighting this for myself but for my daughters, husband, parents, that have all given me the support and love that they have - as I know the greatest joy for them is seeing me better and that inspires me to keep my determination strong.

Every day I still battle to deal with all the problems that lupus brings upon us - and for me having always been an ok weight and fit - now being overweight through all the steroids is one of my biggest negative issues - I know once I can look more like I used to - I can then begin to feel like the person I used to be. But having and living through what I have with Lupus has taught me to be thankful for every day and count all my blessings and always look at the good things in life and not the bad. When I am having a bad day - I always tell myself - there are so many people much worse off than myself - and I am so thankful for my LIFE.

Violet's Story

My early education was affected more by my thyroid problems rather than SLE but the onset of SLE in my early 20s had a massive impact on my life plans.
I've coped with autoimmune illnesses since an early age but it was my parents who guided me through it as I was still living at home. By the time my SLE surfaced I'd moved away from home and was planning my future.

I lived in Asia where I was teaching and my health started to deteriorate, I was offered a position as a manager in a language school but had to turn it down to come back to the UK for tests and later treatment. My plan when I was growing up was always to travel and experience different cultures but this has changed drastically and now I live in the UK with my husband and although I'm happy here I still lose out due to lupus.

I've been teaching in the UK for 4 years now and have found it harder to continue each year. I was again offered a great managerial position at work but had to turn it down as I cannot physically work for 35 hours a week. I work reduced hours (20 hours per week) and sometimes this is too much. It has been difficult accepting that I have to limit my career prospects due to my illness but I don't have a choice.

My support still comes from my family but mainly from my husband who is amazing. Although he does get frustrated at times that I don't have the energy to go out or that I'm complaining of aches and pains. He has been my rock through this whole experience and I'm so lucky to have him.
It hasn't been easy accepting that I can't do all the things I'd hoped to, I can't live in Asia again as the sun and humidity bring on flares. I've had to become content in lower positions at work because I physically can't cope with the higher managerial positions that have been offered and which I know I'm capable of. These limitations haven't completely sunk in but I have begun to think of alternative routes that my life may take. I have to try to stay positive and not let lupus define who I am- although this can be more difficult than it sounds.

I've been told to stay positive and I try to tell myself that, but during the worst days of the illness this can feel futile and it can feel like an uphill struggle. I'm still learning!

You asked me who says I should stay positive- I guess it's my family mainly as they're the only ones I talk to honestly about my SLE and because I've only told a select number of people that I have SLE.
When I get really down and fed up with feeling tired and achey my husband always tells me to think positively and has been known to make me list all the good things I have going for me! My mum is also someone who tells me to be positive and that the bad days will pass and I'll feel better eventually and to take time out and relax and de-stress. She's also the one who is trying to teach me to not let lupus define who I am.

They don't have a specific reason for telling me to stay positive- sometimes I think it might be the only thing they can say! After all, it's not like a cold which will pass in a couple of days, it's a long-term illness. So maybe some of it is because they feel a bit helpless themselves. I also think they find it important to tell me to stay positive because if I think too much about the bad things I'll find it more and more difficult to pick myself up after the bad days.

As I said, one of the alternative paths I considered (regarding work) was working in the UK. I had only ever thought of working abroad in different countries. I'm also trying to think of ways to work more from home and have managed to do some materials development and materials writing for teaching which allows me to work from home and reduce my hours in the classroom when I'm having a bad flare. This is something I'd like to do more in the future and would love to have work published in journals or course books eventually.

The writing is a work in progress! I generally tell people on a 'need to know' basis. I find it's not the sort of thing that comes up in conversation and I guess I feel embarrassed telling people or I feel bad telling them. I have old friends who I speak to occasionally on the phone then I don't mention it- when they ask how I am or what I've been up to then I don't want to tell them a depressing history of the last weeks. I feel as though they don't want to hear the story of my health and it would put them on the spot to think of a suitable response! Also, the longer this goes on the more difficult it becomes to tell people.

Obviously my family know and so do a few people at work- my managers and those I'm closest to- as I've had to take time off and they're more understanding if they know why I'm off sick.
I don't really know how to bring it up with people or how to explain it. There are times I've told friends and when they ask how I feel and I tell them I'm really tired they respond by telling me they 'know how I feel' but they really don't! Maybe it's just easier to keep it quiet...?

I have fewer friends now than I did- I used to be very sociable and out every weekend and meeting friends during the week but now I just don't have the energy. By the time the weekend comes around I'm so tired from work that I need to relax and recharge my batteries for the following week.

A lot of my friends live in different cities to me now and I don't have the energy to go and visit them so I've lost touch with a lot of them. A lot of my friends live abroad as well so I keep in contact with them via e-mail which is much easier for me.

Some of my older friends don't understand how much I have to pace myself now and so we've lost touch. They're the ones I think of as 'good times' friends. My 'true' friends stick by me. It's only natural I think to lose friends along the way, I'm lucky as my colleagues at work are mostly great fun and I have a big family as well.
There are a lot of changes that occur post-diagnosis, they're not all related to health. I think this blog has helped me realise that.

It’s been really good sharing my story in a blog. I think sometimes it's easier when it's not face to face to express yourself. Also, the responses I get from you asking for clarification/ further information has been interesting and has helped me look at things from a different angle.
If I talk to family/friends, they usually try to think of something 'nice' to say rather than question specific aspects of my experience. That's what I mean about it being insightful, it’s made me look at it from a different perspective and looking at other posts also helps me feel less alone.
I'm also hopeful that by sharing my experiences, others might be able to get the help and support that they deserve and need.

Niki's Story

Having a chronic condition, and being relatively newly diagnosed (circa 1 year) has meant major adjustments to my life, both current and future plans.

My hobbies - sport - have had to be curtailed. But I hope to get back to a decent level of exercise, even if it more for well being than actual fitness levels.
My work - I am only working 5 hours per day just now due to tiredness. Work have been very supportive, and when I have offered to increase my hours they have been more cautious. I don't like getting special treatment though, and so hope to manage to get back time full time soon. But for now, afternoons see me resting/napping and so I know it wouldn't be sensible.

Before I got ill, I had lots of plans to do up our home - but now, I'm more cautious about borrowing money in case I can't work. To make matters worse my company is under strategic review, so we are all waiting to find out what will happen later in the year. So now, I'm saving money so that I can either do up the house, or if I lose my job, will have money to keep us afloat. Rather than just doing up the bathroom a bit, I'm now thinking that it might be the time to get a shower (would mean rebuilding the bathroom) as I'm not sure what my mobility will be like long term, even though I'm fine now.

I am described by friends as gregarious. I was always the catalyst for a night out, loving going to music gigs, theatre etc. Now I choose my nights out carefully and try to go for weekends, or if there is something on a week night I might take the next day off work.

Much as I try to prevent it, lupus does impact on so many parts of my life, and that is frustrating. BUT I am thankful that I'm relatively well on treatment, and I know it could be much worse.
Before, if I wanted to change any part of my life, I'd be confident doing it, no matter how big a step it might be. Now, I have to think about whether I could do whatever it is without the support of my family, husband, friends. Emotional support, financial worries, physical support are all considerations that previously I'd not be so reliant on.

I found it very easy to share my diagnosis with friends, colleagues and family. My friends and close colleagues have been with me each step of the journey towards diagnosis.
My colleagues, luckily, knew all about lupus anyway, which made things much easier for me.

Most of my friends are nurses (coincidence - I'm not!) so they had a fairly good insight into the illness too. My colleagues have changed how they work with me - they are careful about not overstretching me, and I think to an extent they may try to protect me from stress. At one point I had a fight on my hands to convince them that I was fit to work! They felt I should be off, when I felt that being at work helped me more.

Family members took a little more work to get them to understand how the illness impacted me. With a mother who has Alzheimer's, I used to do a lot for her. Now I have to limit that so that I can still spend quality time with her, but whilst ensuring that I don't get overtired and over grumpy with her! She is the only person who does not know about my illness, as I don't think she'd cope well with it.

Ruby's Story

Every person has a trigger level- an amount of absences per level with increasing severity of discipline. It is rolling from year to year- so everyone at some point unless they are never ill will have a trigger level. I fought for an occupational health interview who was very knowledgeable about lupus and who recommended I be given a larger amount of sickness times between each trigger level Our OH dept is rubbish and nothing has been formalised. When I went off for the summer much emphasis was placed on the hard work there is to come in the New Year and did I think I would be up to it.

I think it’s a mixture. Because lupus is unseen only you know what a battle it can be just to get up each morning- you may already be missing several spoons- and people don't realise this and forget that and take it for granted. Then because it is unseen you yourself can deny that there is anything wrong- even though really lupus is a lifelong incurable illness. Your life isn't under threat like such a body- they’re running marathons etc- so get on with it and stop moaning! But are they finding the energy because they know time is limited- we have to battle on forever with this...
The spoons says it all!!!

Butterfly

Abi's Story

Transition from health to illness doesn't seem to apply really. I don't think I had felt particularly well for over 10 years, and what the diagnosis of SLE did was give me a reason for why I felt so awful for so long. It put my "laziness" and "lethargy" into context, and helped me to accept some of the feelings linked to that.

I now accept that I don't do things because I am ill and fatigued and that laziness implies an unwillingness to do things. I have the inclination but not the energy to do things and am coming to terms with that now

Butterfly

Phoebe's Story

My transition to having lupus and having to alter my life was a gradual one.

I was the person who burnt both ends of the candle and most of the time in the middle too! I went to university, worked full time to support it (mostly evenings & weekends) and did a shift a week as a special in the police, plus partying. I had energy to go out running, went to the gym and did all sorts of things.

I've spoken about my depression and extreme fatigue at university, well why the depression cleared up the fatigue never did.

Slowly over the years, I could do less and less until after all the too'ing and fro'ing I was hit with the diagnosis of lupus. Since then things have got worse and looking back on old photos the other night made me realise that perhaps the transition wasn't so gradual as I thought. I actually think it was a quick thing over a couple of years and it is certainly hard to accept. Friends find it harder as they don't understand and work certainly don't understand to the extent where they are trying to force me out of my job...but only if I quit. I think I have reconciled myself to the "new" me. It's just other people who have to make the transition.

Butterfly

Fatima's Story

I would like to say that my family are the only ones who are really truly supportive, my dad has lupus and we talk about the illness and how it affects us. My husband is also very supportive but my friends do not really think that I am ill, because I look so well!

At work, I had to tell my bosses but no one else really knows. I have not told all my friends, there is no point as I think that they will not understand.

I feel quite lonely sometimes and I do want to be able to speak to someone who will understand me outside of my family, but there is no such support available as far as I know.

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