Behcet's Syndrome Society
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Is emotional coldness and heartlessness a common symptom??

Hello, im new to this blog but not to behcets disease. I have been suffering for 14 years.

I just thought i would pluck up the courage to talk to other sufferers. I have avoided this for years, not sure why???

Anyway in an extreme short version the present problem im having is.......this is hard!!!!!

Last 2 and a half years my partner has been my full time carer and have been housebound until the last two months.

The immune suppresents ive been on the last 2 and ahalf years has just kicked in, which is amazing but not sure if body and mind in emotional shock as it was overnight. one day in bed, next able to do things i havent been able to for years. This has then continued for 2 months now with odd days of suffering.

Dont get me wrong completely ecstatic with this life im experiencing, but the problem is i have told my partner i have fallen out of love with him. It kills me as he has cared for me not just full time in recent years but over our 15 year relationship. and he is an amazing guy!! We have a 13 year old son together. Not mentioning saving my life free years ago, but thats another story......

My son and i are on our own at the moment, my partner has been not living with us for 3 weeks now.

I just wanted to see if anyone has experienced the feelings i am now having. Im feeling more independant and im pushing loved ones away ( i think ). feeling like i dont need anyone, feeling quite a cold emotionless person. This is not my personality at all. feel quite robotic as if im opening my mouth and talking, and its not quite me talking. Feeling very distant and feel like im trying to lead a separate life on the edge and out of character.

Or maybe this is me 14 years ago and cant remember. I know i was extremely bubbly, fun, always having a laugh.

My partner is distralt, but all i can say is what i have said to my partner. I feel completely confident that im not inlove with him anymore and these feelings have been getting worse in the last year.

This isnt the first time i have fallen out of love with him, it happened 6 years ago. we broke up for 3 months then got back together.

I just dont know if all what has happened in the previous years with my illness can make you fall out of love!!

Is it the behcets?? messing with my feelings and emotions?? ( i had an MRI scan 3 weeks ago showing inflamation around the outer membrane of my brain but not on inside, i am on treatment for this)


Are my feelings genuine??

The reason im doubting myself now is this is what a few friends and family have said to me recently as i have been mentally affected by bechets before and a few years back i wasnt on right medication. the medication was slowly poisoning me masking the behcets not treating it so it got into my brain and made me act completely out of character for a few months, then even though i dont remember what happened and i definatley did not plan or remember how i did it, but i comitted suicide and had two cardiac arrests. was in coma for a week. nearest and dearest were told she wont survive. here to tell!!

Wow, that was hard to tell.

Anyone had or having similar experiences??

Thanks for listening to me blurting.....x

34 Replies

Hi jeni2007

This is a real difficult one to answer and I really feel for you, your husband and family.

When we have a long term illness and it puts us in a position of vulnerability it changes the dynamics of the relationships we have with people around us.

My relationships have changed due to this horrible illness and I guess some do not stand the test of time

Some people distance themselves from us and others work hard and care for us. I have lost many friends and even some of my family over the years and believe me when I say it can be a lonely place to be in.

What you are experiencing could be a combination of being ill for such a long time as we need so much energy to fight it that this sometimes doesn't leave room for anything else. This kind of makes us selfish, cold and emotionless, although selfish is probably not the word I want to use. The way I explain this to myself is that there is only enough energy to go around and fighting an illness takes up most of it. Your body is so busy fighting this illness that other parts of you get left behind. It is the bodies way of surviving.

Having inflammation on the brain is not any easy thing to cope with as it does really mess with your thinking. My personality has definately changed over the years and particularly in the last year or so. My thought processing is definately not the same as it used to be and I have to work really hard to keep myself on an even keel and question myself a lot.

Appart from that some medications can make you feel really low and this could be something to discuss with your Doctors.

I hope you don't mind my saying but it sounds as if you would benefit from talking to somebody professional. Preferably somebody like a clinical psychologist who deals with patients with long term health conditions.

I have seen counsellors and psychologists in the past and they have helped me to look after my own mental health, so I make better decisions about things now.

The fact that you are questionning yourself means you are probably not completely sure of the decisions you are making at the moment and that wouldn't be suprising.

I think the Centres of Exellance for Behcets have Psychologists attached to them and so this maybe something you can look into as they will know a lot more about your condition.

If you email the Behects Society on

They can tell you if there is such a thing or they may have a consultant on their list that they have.

The other thing is to look through the posts by using the "Search" box above on the right to look at other posts that might help.

If you want to discuss personal issues you can make the post for the forum only by clicking the button when making it or private message a member.

Hope some of this helps and keep in touch



Hi Jeni Hun,

First of all I want to say thank you so much for 'coming out' and telling us your story and especially how you feel. It means so much to me personally as (here goes the hard bit) I am doing this exact same thing regarding relationships at the moment myself. I have gone through it with family and all who are still alive are now estranged. My husband is my full time carer and we laugh a lot together but there are times when I feel absoloute hate and times when I feel just total disinterest in whether he exists or not. I am so thankful that our relationship has survived for 19 years so far and he is an incredibly strong personality and can stand back, call me a heartless thankless tart and keep his distance mentally until I come back to the real world. I have to say that I also have other mental issues as a result of BD in the form of OCD and agoraphobia which is related to food and contact with people.

Jeni Hun, I don't pretend to understand it. I too am hoping the centres of excellence can pick up this side to the disease and help me. (my first appointment is next month although I have been diagnosed over 10 years now and actually have had symptoms all my life and I am now coming up 55years old.)

I really think it is the BD that is causing you to feel this way. My personal thoughts ( and they are strictly whats in my head Hun,) is that the disease takes up so much of our life that we appear sometimes to shut off everything else and this includes our personal feelings. I am a very 'cold fish' the majority of the time when it comes to people in a face to face situation but then again, I never did take prisoners !

Andrea has given you some wonderful advice and other places to research more yourself. I really believe the new centres will help with this one as I have never had any professional help with this matter and I certainly don't understand it but I do believe it is partly personality change driven and partly a physical reaction because of what is happening to your body. I too have been down the 'idiocycratic intercrannial hypertension' route not too long ago and it very nearly finished me off literally. (Thats inflammation /water retention on the menengis surrounding the brain to anyone who hasn't come across it.) Andrea is very wise and I listen to her advice frequently, I hope you feel you are able to do the same. I too have only plucked up courage to 'come out' and write on this site a few weeks ago and since then I have managed to help some in a small way and help myself in huge leaps. I really believe you have come to the right place to express yourself and get some of the healing you definately need for yourself.

Jeni Hun, please don't finally blank your relationship completely yet. Yes... it may well have run it's course but ( and a big but here) It may well improve enough in the future to be workable for you both. Only time will tell but I think it is too early to finish such a long term relationship until you have sought all the guidance that is newly available to us from the centres. It may be that it is the natural way to go at the end of the day but you are clearly going through a 'butterfly emerging stage' in some sense and you MAY not be thinking as yourself at the moment. Perhaps your husband could enter the forum and listen to what is being said in the background ?? After all, he is going through hell due to BD as well. He doesn't need to speak and this is something you could agree between you as it certainly shouldn't be viewed as a marriage guidance forum but it might help you both ...perhaps??

I am just trying to offer you some moral support in some way Hun. I really don't know how successful this attempt has been and I now feel pretty vulnerable myself for having 'bared my arse' as it were in public so I'm going to shut up.

Please let us know how you progress Hun and keep in touch. I for one will be trying to hold your hand so to speak in the best way I can. Take care, big hugs xxxx


Well done xandii

It is really hard to bare yourself in this way and I agree with everything you have said. You have put it into words in a way that I can't so I do hope it helps jeni and also you as much it has helped me.

thanks Andrea


Thanks Andrea, you're always so supportive and kind. Suddenly we find we are not as 'unique' as we all thought we were and we find closeness and compassion within our like kind. One day I'm going to get brave enough to actually tell everyone what my real name is but at the moment I'm so far back in the wardrobe I'm almost living in Narnia LOL. Big hugs xx


Hi all, I have to agree with xanthii (and of course andrea):

Xanthii's comment: "the disease takes up so much of our life that we appear sometimes to shut off everything else and this includes our personal feelings".

I've always been a 'giver' and thinking of other people. At the moment I just can't do it - and that's when you know who your true friends are. There is a 'friend of a friend' who I have helped in the past with courses - I explained that I was up at hospitals etc and he was really annoyed that I couldn't help him out of a situation that was his doing (leaving things to the last minute).

I read a good quote once in a doctor's surgery:

"Lack of planning on your part doesn't constitue a crisis on my part". (Nothing really to do with what we are saying here but I'm learning to say 'no' (nicely) to a lot of people and that tends to isolate me and people are saying 'I've changed'.

Hope that makes sense. Good to have a forum where people understand.



Welcome to the site Jeni.

Thank you for sharing your story and being totally honest. I think you will find that on this site, we are all honest and good listeners. I have always believed that writing something down on paper (or on computer) is a therapy in itself. I have suffered depression for years and have struggled at times to cope and to be honest am having difficulties in my relationship too. Take the advice of both Andrea and Xandii. Take a step back and take your time. I hope things continue to improve health wise and big hugs!




I just want to send heartfelt hugs to Jeni and Xandii for sharing their stories and personal observations in this post...thank you.

Klaris xx


Interesting that you talk about emotional coldness can happen with illness. I know exactly what you mean about feeling a bit emotionally detached from a person, and it is easy to think it is the person you are out of love with when it might just happen with anybody. You get so worn out by the physical, there may not be any room for the emotional.

I was doing some research for a possible idea I had for writing a story recently and had to look up hormones. I was particularly interested in the hormone oxytocin, which we know is the hormone a woman gets at childbirth before birth to help bond and protect, and after to bond more with the baby whilst nursing and is released while breastfeeding. It is the hormone as well that is present in pair bonding, and is the root of those feelings of 'being in love' on a physical as well as emotional level. I know that one of my partner's complaints, is my very very low sex drive which at certain times of the month is non existent. And I was interested to see, that this hormone oxytocin is produced in the part of the pituitary gland that happens to be non-fuctional in me. My sex hormones are all over the place because of the failure, and I have diabetes insipidus as a result.

What struck a chord with me was that a person who does not produce much oxytocin, or none at all, is considered to be an 'unpleasant individual' according to studies, i.e. someone very emotionally independent and unable to really bond with others and can find it difficult to find pleasure in touch, or be aroused either sexually or emotionally by a partner or spouse.

Hormones are complex things, as well as oxytocin there are links to seratonin etc (also known as a love hormone) and as someone who has experienced taking ectsasy, which gives you a seratonin rush, I can vouch for the fact it can make all sensations pleasurable but it really does make you feel bonded to those around you. Trouble is that anyone with a chronic illness, or long term pain, find that the illness depletes their levels of seratonin and so can be missing out as far as feeling connected. Those who suffer from depression, or post natal depression can find it difficult to not feel numb and detached and are often treated with drugs to aid seratonin uptake.

One interesting thing I found, is that hormones quite often like to travel from place to place in the brain, along nerves rather than blood vessels and often will not go into the main vessels either but just capillaries. This is why my pituitary is failing the docs feel, because there is vasculitis in those blood supplies to nerves. I do think that BD or any chronic inflammatory problem can cause terrible upset with moods and emotions, it can make you feel unnaturally elated, hallicinogenic, as well as depressed, bi-polar but can affect simple touch and enjoyment of food, or sense of smell etc.....I get these odd sort of aura type episodes pre a Behcet's flare up. My pupils become dilated, things start to sound unnaturally loud or seem jarringly bright. I feel paranoid, as well as thinking that I recognise strangers in a crowd. I get a certain look on my face and before I even know I am unwell, my partner knows the look with the large pupils and gets me home....then within a few hours, symptoms start coming out. Sometimes the aura is quite mild and just means I feel underconfident, or a bit snappy and intolerant, or weepy and upset about not a lot. I can get physically clumsy too and cannot find the right words to use, so then upset people by not being able to explain myself properly...I can even stammer and stutter or be utterly speechless....all as a result of my BD..

I know my BD attacks also are worse at certain times of the month.....

We are just a walking bag of biochemicals and made for certain functions to procreate the human race, it totally makes sense that illness is going to upset the emotions as well as just be physical symptoms. Docs only scratch the surface of what happens with sytemic illnesses, so they don't have all the answers.

I find that although I am sometimes weepy, and fairly needy, that if I am in pain I find any kind of touch or even being near me highly unpleasant and this gives the impression of me being an unemotional uncaring person. I make every effort not to be selfish, and to keep in touch, but although intellectually I can care about my partner and I know I love him very much, I keep forgetting to show him....that makes it sound like I am out of love with him, but I am not at all and feel close to is just that lack of certain hormones along with chronic pain means I forget to show him that.

I have been with my partner for 27 years and we have had our ups and downs, mainly caused by the burden and stress that he has on his plate because of me being ill.

To begin with, I shared everything with him about every little thing that went on good or bad and being so used to doing that, carried on doing it when I was very unwell with the result of worrying him sick about it. So, I had to pull myself back a little and put on a brave front and now I try not to worry him about certain aspects of my illness until it becomes too big to hide, but the result is, that over a long time you do become more independent and their can be a bit of a void between you if you are unable to be 100% honest.

There is also the aspect that for some of us, we try to imagine what it might be like to have nobody as our partners are our main carers. The fear of losing somebody makes us convince ourselves that it is inevitable that we will lose them one day, and that they cannot possibly want to stay with us in such a horrible situation and we don't have much to give back etc etc. I think it is then that despite loving someone, it could possibly happen that a person tries to cut their ties to others and when all this is going on, and you are too ill to feel 'normal' then we might find ourselves in a condition of feeling detached and convincing ourselves that we are out of love, rather than sitting around waiting to get hurt first.

I have had friends in the past that have become quite severely depressed but in the intial stages did everything they could with being unemotional as well as being deliberately obnoxious until it drove everyone away and they did not recognise that being self destructive in this way was a common pattern of behaviour. Then when they had driven everyone away, they turned in on themselves and felt bitter and resentful and sometimes suicidal because of nobody caring...when in fact, people had cared, but they had pushed them away.

Then there is medication. Pain is a sensation that is just at the other end of spectrum from pleasure....but it is all sensation one way or another. I think it stands to reason that a painkiller could be a potential ''feeling'' killer too, it numbs and confuses the brain a little. Short periods of illness perhaps can be withstand this interruption but in a long term illness, if chronic pain has to be controlled as the main priority on a daily basis for many many years, then I can see that relationships and emotions can take a back seat as they get blanketed.

I think the sensible thing is probably not to discuss and test out any feelings with a partner, but to discuss those first with a counsellor who might be able to give you more important advice about the complications of relationships between carer and patient if they are also lovers. Perhaps if you try to explore this with your partner now, and you don't find the right words to explain it, he will be distraught and make a decision to leave, when in fact you were only voicing a 'what IF' I am out of love with you? worry, rather than a definite 'I am'....once you have discussed feelings like that with a trained counsellor, then you can pick the right words to talk to your partner and tell them what you have been feeling, and what information you have found out about it.

One thing about myself, if I am in an 'aura' stage of neuro BD coming on, I do not talk about anything emotional or make an important decisions until the phase has moved on a little. Sometimes friends or family will bring emotions to me, when I am not that well, and it never ends well for any of us.....always better delay telling someone what you think you feel, until you are certain that what you feel is either permanent or unrelated to other factors...

Sorry this is a long one, but I wanted to tell you that this question of bonding had been on my mind a lot recently and that I had been through similar thought processes myself. And I wanted to try and prevent you from being self destructive and sweeping everything aside that could be good about your life, if it was just part of your illness and not your true feelings if you know what I mean.

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Thanks Erssie, You clearly have a comprehensive knowledge of the technical aspect of how feelings work and the chemical reactions in the body that trigger these. I found what you said made complete sense and I will be researching further some of the points you have raised for my own understanding of the whole mish mash that goes along with this cruel disease. The agoraphobic side of my character hates physical contact of any manner especially clinical prodding and poking and sex has not been on my agenda for well over 10 years now. The closest I get to showing how I care for my OH is holding his arm or hand when he is helping me to the car or touching me when I need assistance bathing etc. I am lucky in one way that my OH is also diabetic (as am I) and has no interest in sex either which is a result of his condition. It causes quite a shock reaction when someone I meet in a medical situation wants to shake my hand and I instantly whip out the anti bacterial gel to clean my hands.

I just wanted to say thank you to all who have responded to Jeni's initial question and who has, in turn, prompted this huge outflow of concern and sharing of very personal information as a show of solidarity. Although many aspects have been hard to admit by speaking out, I personally feel a great sense of comfort that I am not alone or unique in my little confined world of BD. Thank you all so very much and thank you Jeni for coming forward and sharing in the first place. big hugs xx

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I am not agoraphobic in the sense of not wanting to go outside in open spaces, but I absolutely hate shopping in crowds. I have extremely sensitive nerves and probably like you if you are diabetic, I get peripheral neuropathy but also have mono-neuritis complex and compressed median nerves causing nerve pain similar to amputation pain.....and this really makes me on edge in crowds of peopleand actually it is more painful to me if someone accidentally brushes against my arms than if the grab it firmly. The worst thing is when I go to accept change in shops, I ask politely for them to put it on the counter as my hand will not turn over but I still get problems when I hand someone a £5 note and if they grab it too quickly, the snatching from my hand feels like broken glass scraping my fingers.

I had a friend who was diabetic, and he eventually died due to self neglect as he could not longer tolerate his nerve pain. Peripheral neuropathy sounds so pathetic when describing it to folks, but believe me the avoidance of touch and the pain that is suffered is a big big thing if it causes some people to deliberately cause their own death.

There are two things that have made my nerve pain more bearable. At one time, when the main nerve got blocked as an overnight thing it was so shocking I could not breathe and was winded by it, I was doing this sort of inward shrieking type thing and literally peed my pants it was so bad.

What has helped my tolerance of touch, has been the pregabelin and lyrica coupled with cannabis treatment. But it does not mean I feel comfortable with being touched. I cringe as well if anyone is sitting near me and I anticipate being touched, as I know it will probably hurt.

My OH still has a sex drive....we have had sex about once a year or less, and it usually requires a lot of building up to and I cannot always relax. Being incontinent, I am so busy trying to stop myself from leaking a bit of wee or poo, I cannot really enjoy it. I have poor hygiene which is embarassing due to my arms being too short to reach my bits for wiping my backside, showering or washing and am sure that does not help to feel good about anyone going near the pants region.

I am totally amazed though, that the OH has remained 100% faithful but also non demanding. He worries about it secretly, and suffers the distance between us....shame really. Unlike some of the other folk on here who feel they are out of love, I sometimes get weepy and nostalgic about how right we were for one another when both healthy until that awful summer I got sick when I was about 30 yrs old. Since then things have gone wrong for us with deaths of all our family (we literally have nobody we can rely on) and several friends deaths too, lots of redundancies (3 in the past 18mmths for my OH and one medical retirement/sacking for me) and being dirt poor etc etc....and now both of us being out of work and not getting benefits sorted yet....that will be the next hurdle, trying to allow docs to prod and poke me for my ESA assessment!!


Oh Erssie Hun, I feel for you so much. I am on the same drugs as you state here and have the same physical problems along with it. I too have not got a problem of being in the outside fact I love to go for long drives up the mountains with OH in the open air. Agoraphobia is a very missunderstood condition. It actually means fear of interaction with the outside world not fear of open spaces as most people believe. You are describing my agoraphobia exactly except I am also OCD which is related to food ( from supermarkets) and people in them. Hun.... perhaps you need to talk to your GP or consultant about this because it is a mental illness and one that seems to be prevelant in BD. It also counts towards extra points on your claim forms for ESP and DLA. Remember to include everything that is wrong with you when you claim to give the correct picture of your illness. ttfn. Take care, big hugs xx


I don't have so much a fear of interacting with people, I quite like that bit. I just hate being in a busy crowd because people bash into you, or brush against you and it hurts where I have been scarred and you can't quite get out of the way fast enough, especially if you have trouble balancing. But I do live in London and to go out, does mean squashing into tube trains or standing on crowded buses getting thrown around.

Actually, even the wind blowing against my arms hurts my is just where main nerves are severed or compressed by scar tissue, the brain thinks my limbs have been cut off, so they amplify the signals. It is a problem when I am gripping something, and someone snatches it away from me, the nerves feel like broken glass rather than something soft. MY GP and my neurologists know all about it, which is why I was put on pregabelin and non opiate based painkillers that are more suitable for nerve compression damage.

I get it when I am trying to dress, wash or brush my hair, if something is evenly lightly moving across the scarred areas, it is searing pain.....perfectly normal for people who have damaged nerves. I have even heard of some people that get amplified nerve pain in their teeth, after the nerve has been totally removed....luckily all my teeth are good.

But I honestly don't feel that I have a mental problem with interacting with the outside World as such, just that it is physically painful on my limbs if its crowded and I don't like people touching my skin on the scarred areas. It isn't quite so bad on the normal skin but tops of my feet, buttocks and both arms up to the shoulders are badly scarred with contracted scar tissue that gets tighter all the time. I jsut have to keep up with exercises and drugs and minimise getting stuck on trains with arms squashed up against people.

But I do have a mental problem when it comes to interacting with medical people....and that is a phobia of hospital stuff. I went to a psychologist years ago for treatment as a phobia, and he said actually a phobia is normally a fear of something happening that is not reasonably likely to happen i.e. its a hyper-response to an imagined fear . When he asked my why I was scared of hospitals, and I told him what it was that frightened me, he knew those things had actually happened to me on a regular basis over a 2 yr period (misdiagnosis, refusal of pain meds when needed, wrong treatment given, wrong medication given inc ones I was allergic to, wrong type of surgery done, bad reactions to wrong meds causing life threatening circumstances etc, being left lying on the floor in my own poop for half a night, seeing all these things and more happening to other patients esp elderly folk, witnessing physical abuse of staff who slapped elderly folk who messed the bed) and he said that he could not help me to accept these things were highly unlikely and could not happen again, because in all likelihood they could happen again and do happen all the time so he could not make promises that they wouldn't!

I had been injected with the wrong stuff 3 times on a hospital ward and could do nothing to stop them doing it, even though I knew it was the wrong stuff. I was also humiliated quite a few times when I could not control bowels or bladder, as helping me clean up or get to the toilet was not seen as a I hate being in hospital.

So it is like a fear of loss of control. The psychologist said these things do happen and medical centres are not perfect, so I got a diagnosis of having a ' a very real but reasonable fear of recent problems around the treatment of her condition recurring' and as could not guarantee it would not happen he felt that to try to treat it as a phobia would be like trying to convince me things never go wrong, or rarely do, when in fact it isn't that rare.....I have told my GP that if there is any other choice than attending a medical appointment, I will take that choice and I rarely even let the GP into the house he has to do everything by telephone as I find his surgery to upsetting....recently, he had to examine me after an injury and also helped me get DLA as my living conditions got a bit squalid with the OH and his spinal I let him in my home....but a stranger in a normal hospital? I have not done that for a few years I can see, if there is a choice between seeing a medical person and getting ESA benefits....or staying at home and getting no benefits whatsoever, my phobia is likely to make me do the latter however bizarre or stupid that seems.

I am the best person to control my medical condition, I have had it for 15 yrs and know what works and what does not...and if I am extremely unwell, I stay at home and deal with it....if I can't, then I do take a lot of chances to avoid being in hospital.

However, I do have two appointments coming up in late March and possibly April which are unavoidable, and only time will tell if I actually make those hospital appointments or cancel them a month before they are due.


Good luck with your appointments Errsie, I wish you well Hun. Of course you know yourself best and please believe me that I have just offered a personal oppinion. Perhaps I need to reign back on my oppinions a bit more in the future so as not to offend. My sincere apologies. Take care, Big hugs xx


No need to apologise! I think I just explained myself badly....I suddenly realised that I had made it sound like I had a psychological problem with touching coins or money other people had touched (like OCD).....I should have explained that my hands and arms are disabled. Both arms are shortened and elbows locked at right angles, and hands face downwards and wrists locked so I cannot face hands with palms upwards. it is something to do with the contracture of scar tissue and there isn't a cure for it, as operations will cause more scarring. This means I cannot physically turn my hand upwards for people who hand back change in a shop....I have to ask them to put it on the counter and then either try to pick up with just my little and ring finger of left hand faced down, or I have to slide it off into my purse.

What I was moaning about, was that in crowded places it is physically painful if people squash right next to the arms, as they are badly scarred and have nerve damage. I don't like crowded places for this reason. I mean really overcrowded places like it gets in London on public transport and on the main streets. People bump against you and trap your limbs.

And often when I hand over money notes to people in shops, they snatch them too quickly and that burns my fingers.....or I have a problem letting go of the money if my grip locks (which is embarrassing but quite funny I am loathe to part with my cash! I normally make a joke of it). I have also lost, and had valuable stolen form me because I was not able to hold them properly or was not aware of what was going on.

I was not at all offended by what you had thought, but just thought I might have explained myself really badly and might have been getting undue sympathy for something that I don't have. I have lots of problems with medical phobia and terrified of treatments or medical staff, but agoraphobia or interacting in the outside world as you describe isn't something I have experienced, so don't know what that is like.


Thanks for understanding Hun. My probelm is fear if contact with people and food because of potential bacteria contamination which makes me sick and from my experience it really does ! LOL. I only have physical pain with touch because of neuropathy and I take tablets for that. You have my heartfelt sympathy with people bashing into you especially in London, the tube is like a sardine tin at the best of times during rush hours. It must be very frustrating for you and annoying to say the least. Good luck with the appointments Hun. Let us know how you get on. ttfn, big hugs xx


I have a similar fear as you with food, but not so much with bacteria as the ingredients. I suffer from pancreatitis and can't digest fats so need to avoid particular kinds of oily food. Trouble is, if someone serves me a dinner with unknown ingredients and is not honest about what is in, I get sick. Or the other thing that has happened, is that I get served something I can't eat but eat it out of politeness as it seems rude or extreme to turn it down...and then get sick!

The thing is, if any of us have experienced something and got sick from food, bacteria or the wrong kind of treatment for BD (which according to my medical negligence lawyer friends happens a lot ) then all we are trying to do, is protect ourselves by being cautious. Of course that can tip us over the other way but I think if you have had a fear of potential bacteria etc and have been really sick in the past because of that, you are probably going to be a in a similar boat as me with my fear of medical has gone wrong in the past, therefore can go wrong again....and that is not an irrational fear, my psychologist says it is a reasonable and rational fear if it can happen and that is a problem difficult to treat.

If a person is terrified of clowns, then you can try therapy to retrain a person into accepting that clowns are practically harmless....if a person thinks that they will pick up harmful bacteria from touch, but are otherwise healthy and not at risk, then perhaps you can recondition someone to accept that their fear out of proportion to what can happen....but if you have poor immunity and poor health and have had a real hazard with bacterial infection in the past,it must be difficult to get a person to accept that and take the risk anyway?

The same thing can happen with a fear of pain. Lots of us are really geared towards a fear of that because we have had painful conditions that were very difficult to treat. My pain psychologist made sure that I am in control over my pain relief, and not dependent on another person, therefore reducing the fear of pain has actually made my pain much less and easier to treat.


Just read your post. I was diagnosed a year ago. After another sleepless night. I just read your post. You have described me. I have decided I need to talk to a professional. I cannot carry on like this. I can honestly say I just don't care - about anyone or anything, except my husband and two daughters. I don't know if it is the disease and me coming to terms with it, or a side effect of the medication. I have a hospital visit soon, so I will discuss it thrn. Thank you.


This thread couldnt have come at a better time gor me.

On Wednesday I ended my relationship with my partner. Iv been having tons of tests done recently and know that my pituitry gland is shrinking (atrophy to pineal gland). I also collapsed on Thursday and was admitted to hosp, yest I had a lumber puncture which showed I had a pressure of jusr over 25 in my brain. Hence my blinding headache. A normal pressure reading is anything between 1-10.

I just felt the same I didnt love him no more.

He has stood by me and been my carer for the last however long, and a week ago I started walkibg better. We havent had any intimacy in around 8 months. I cnt evn bring myself to kiss and hug him. I fl really guilty tbh tht now my meds r starting to work I leave him, however I did split up with him at Christmas and took him back on the understanding that he changed certain actions.

If something isnt his decision he sulks n really spits his dummy out throwing bigger temper tantrums than my two yr old. Iv just had enough of pandering to his ego as well as juggling my kids my degree and bd. Everydsy he causes arguments just to get my attention, its more so when I am busy tbh- seeing to kids (as much as I can), out with mum, in uni, if im spending time with friends- u get the picture. Its like he wants me to b sick. He stresses me out to the point wer im flaring having huge contractions (have colitis too) my gastritis flares n then bd lol and my mobility is ltd then tries to b the big action hero. Iv actually started since Xmas blanking his calls n txts to avoid stress (nt a good relationship). My mum has even noticed his behaviour. But more recently its getting worse.

At my nans birthday 7th Feb he spat his dummy out coz I gave her a hug n kiss literally infront of everyone, it was rediculous. See u cn hug n kiss sum1 ( yes but my nan doesnt tk tht to mean she cn grab my ulcerated parts immediately like a teenage boy). So I stopped kissing him months ago to avoid painful gropes in response. N tbh I found tht repulsive behaviour. I aint no sex toy! Im a woman n demand a more respectful approach to my body.

So, the weekend before was the UK bby convention and I had got tickets for me my mum n my kids. He throws another strop coz I never want him to come places like that with me its always my mum. So I explained to mum n Dave came. Id been looking forward to it for about four months! Had a steroid inj so I cud make the most of the day with my kids. Within ten mins of getting there he spat his dummy out 'u didnt tell me it waa going to be this sh*t, I wanna leave now' I refused. The whole day he sulked, dragged his feet along the floor, was blatently rude to peopke in an immature way. I felt ashamed, calling me selfish n so on, bear in mind iv only just got out the wheelchair so these r the first few months iv actually been able to go places n enjoy things again. Think he pref me sat at home waiting for him tbh.

Last week I had my barium meal, as some of you know. It wouldnt pass through so they gave me something to induce the cobtractions and make me go. By the evening it was like child labour (iv had three so not exagerating), I was stood there holding a wayerbottle against my tummy in one hand and painting his daughters art project with my other, whilst he sat there making bets on his Fone. My mum cm in n gave me a dime bar as a lil treat but said sorry Dave only had enough change on me for one. (Dave hates dime bars). So I joked n sed id shave him a corner off. Well he flipped calling me the most selfish person in the world. Yer ok, stood there in agony doin ur daughters project but im the selfish one. He apologised following a row. But he seems o think the word sorry means he can act how he likes and get away with it.

On top of this he facebook stalks me, wants running commentry of my day literally, its overbearing. He says its coz he carea but I personally think hes insecure. He pref me bein ill n stuk at home. People ref to us as beauty n the beast he aint the best lookn guy n in my younger yrs I used to model. So before I got sik he treated me as arm candy, he really did stand by me, never left my side thru hisp etc, but he seemed to hv the attitude I shud worship him n brown nose him coz hes stayed with me whereas I think a relationship regardless of any disabilities shud always b about equality n respect n love.

Iv jus got fed up of daily rows n insinuations, spiteful comments and so on.

So I split with him.

Originally reading this thread I had my foubts and was going to wait n c txt him n change it to a break of sorts, but now iv poured it all out im thinkin iv made the right decision. I havent seen him since last thurs and my symptoms (despite my head) are so much better! My colitis gas eased loads. Mum used to laugh n say id b a size 10 in the morning n b a 14/16 at night id swell that quickly tummy wise with the stress. I think me being ill made him fl more confident in the relationship so hed constantly stress me out.

I dunno maybe he didnt realiae it n wasnt coping too weell n this was his way of expressing that. I dunno. But I cnt live like that, I cnt b bound by no mans chains jus coz he doesnt mind helpn me put socks on or with the kids on the rare occassion mum waant there. Iv felt much happiee tbh.

But now I am wondering whether it cud all b an emotional mental response of bd, as he says iv been physically distant which I hv but I hv no inclini or want to cuddle up n kiss him etc. Since starting lyrica start of Jan my libido has been returning but iv not wanted to sleep with him as I just dnt fl anythn for him.

Iv turned loads to my kids dad tbh for advice (he practices Buddhism) n I dunno if my feelibgs towards him r hieghtened coz of the meds. Ahhh lifes so complicated lol. I split up with him 2yrs ago du to post natal depreasion, bd had flared during pregnancy (dindnt kno it was tht at the time) and I was in agony then wheelchair bound. N I guess I blamed him at d time psycologically. I dunno. I jus had tons of anger n left him. N wev remained friends (known him since 2yrs old). N hes always made me laugh wen hes come round to c kids n pik them up, esp wen iv bin really ill. N its jus nice to laugh if u get me. Dave seems to think mkb me cry will kp me trapped n feelibg needy. Iv neva been needy ever!!!

Iv had my own business for over ten yrs n had to giv it up du to bd, iv never once been the needy type. No woman needs a man, but to b with one u hav to want them n I sadly just dnt fl tht passion for dave. I fl hes used my bd to hurt me more n mk him fl confident eyc.

I dunno. Heads banging cnt think straight. I just kno I fl nothing for him. Cud this be the BD?? Or du think its due to the reasins above? They wer not isolated incidents theres practically something daily n he was mkn me fl depressed tbh.


I have got half of a failed pituitary gland too....nobody knows why. It has affected a lot of my sex hormones and caused Diabetes Insipidus and made me incontinent.

It has a rich blood supply and docs suggested that vasculitis as well as constant high fevers are what have blocked or destroyed the half that has gone.....Do you get DI with your pit gland....and did you put on any weight and look Cushingsy when it failed? I know that the upset in those hormones has completely changed my anatomy in the genital area, and has affected my ability to bond with people properly.


i dont actually know... prof moots just said oh we wont worry about your gland... and that was it, never spoke of again!

I have put on weight iv gone up three dress sizes since september last yr x


When half my pituitary gland failed, I found that despite not being on steroids I have gained lots of weight. I was a UK size 6 at one point, and am now a UK Size 18 so that is 7 dress sizes!

I was peeing loads and became incontinent and needed a commode by the bed which I was using about 20 or 30 times during the night. I had a water deprivation test and was diagnosed with Diabetes Insipidus due to lack of a hormone from the pituitary, and take Desmopressin for that. I don't know what bit of your pituitary has failed, but if it is the same half as mine (it is split between anterior and posterior) just keep an eye on your hydration and peeing and if you are excessively peeing large amounts of very watery looking pee, and are excessively dehydrated, that could be due to a lack of vasopressin synthesized in the hypothalamus and stored in the posterior pituitary.

You can be prescribed hormonal replacement for that.

I had a similar response when I had abnormal levels of FSH and prolactin, I was told not to worry about that as there was nothing that could be done and it shouldn't affect was only after months and months of peeing excessively and seeing lots of incontinence nurses who only prescribed pads and bladder training, I just happened to mention as a throwaway comment to an endocrine doc how tired I was from staying up all night peeing, and he decided to run the water deprivation test.If I had not made that chance remark, I would still be peeing and nobody taking much notice of it.....even lots of urine tests never came back as abnormal, because that was not what they were looking for. If it had been more comprehensive then anyone would have picked up there was too much water in my wee and I was constantly thirsty and addicted to ice.


Sorry had to post that early as phone was playing up. N I think msybe thats mkb me also fl drawn to kids dad as hes always made me laugh n wud meditate with me etc etc. N im more conf about whether I wud fl tht way- drawn to him- if I hadnt been gettn dragged down? Or whether its just the laughter im drawn to n wanting to laugh. I kno tht ship has sailed. He asked me bk wen id first started seeing Dave n I think tht that was my last chance there n tht ship has sailed. So I dnt kno wat im feelibg tbh, maybe its jus wishing I cud turn the clock back pre bd. As I was healthier n pain free etc. I dunno. N obv ant was pre BD. Or is it coz I am still attracted to him.

Dnt worry I aint loojing for a relationship just trying to psycoanalyse my own feelings lol. Im concentrating on my kids n my health. I think I may hv come out the flare sooner if it wasnt for the daily stress of dave. men ha! BD ha!

But now u hv me questioning it all? I was really sure of myself. But I was attracted to n loved up with Dave b4 I got sick in June. They wer prob sum of my best months ever. So obvs I kno without bd it may hv turned sour, but I cnt prove tht. So I dnt kno if its the bds fAult - my feelings, the bd causing his actions n so on.



Ya know what Lizzy Hun....... even through your illness you can still smell a rat when there's one about ! You seem to have reasoned this out and I think, you've reached the right answer with this one. Sure you have all the same problems we have all been talking about but at the end of the day, If it waddles like a duck and quacks ? Chances are's a duck so I don't think you should be beating yourself up over this one. Methinks there in the background is the 'knight in shining armour' hovering on the side lines. so NEVER say NEVER Hun ! With no complications stopping you now ya never know ! I have had a relationship like 'Dave' and at the end of the day I was well rid of him as I believe you are with said bully. And yes....I did say bully because this is what you have described to us. I say good riddance to a bad relationship Hun and I wish you every success in moving forward in whatever direction you find yourself going in the future. Take care Hun, keep in touch. Big hugs xx


thanks so much xandii

I gues i just needed to hear that i wasnt being selfish, as i have been beating myself up over it x


Hi Lizzy

I'm single so maybe shouldn't comment but from someone looking at the situation objectively you have enough to deal with your BD without dealing with all that emotional stress etc.

Maybe you could get counselling before getting back together?

(I'm trying not to say too much).



Hi les,

please don't think that just because you don't have a current relatioship that you can't comment on this topic. It is fantastic to have an objective view from someone who isn't wrapped up in it all as well. I personally respect everything you always say and I find the advice and information you give me very comforting and useful. We need someone with a level head when ours ( and particularly mine) is swimming somewhere on cloud nine. LOL. Talk soon please, ttfn, big hugs xx


Even if you are single though, I should imagine you do interact with people and I think it is not just pair bonding that can be affected, I bet you have a lot to add or even advise when it comes to interacting with anybody or forming a bond with fellow humans.


Thanks for that. I've always been a very friendly person. I'm one of those people that people confide in. Twice now someone has rung to tell me their bad news first (e.g. they had been diagnosed with cancer and had to tell someone.). I've always been a good listener (but maybe a bit quick to give my opinion). On the other hand I am getting very emotional and tired (used to hold it all in) - but I don't think too many people around me realise how 'fragile' I'm getting.



awe lesley i think someone with your view point is great, he wont do counselling as he wont accept he has any responsibility, even today i heard hes been saying i must have been texting or meeting sum1 else to have split up with him, despite me clearly telling him my reasons for leaving him he still sees it as a separate responsibility.

When i mentioned counselling he told me to go on my own if i wanted to, but he was perfectly happy the way he was and i shouldnt try to change people.

Iv given up i tried my best, but after today he can just go do one, as he still doesnt believe hes not done anything wrong, despite imbetween these comments apologising, so sorry is clearly just an empty word he is saying as he seems to think it will get him what he wants. he doesnt actually mean it. good riddance!

thanks everyone! xx


No worries Lizzy

Be strong - I think you will feel better for the 'space'



Jeni and lizzykarma,

After doing quite a bit of research I understand there is a connection to Behcet's and depression, and also to Behcet's and Bi Polar disorder.

I have had Behcet's symptoms since I was in my 20s. I was finally diagnosed with Behcet's about a year ago.

When I was in my 30's, experiencing my worse Behcet's symptoms, I was hospitalized (Psych hospital) and diagnosed with Bi Polar disorder. The depressive episodes lasted longer than the mania, and as I grew older, it pretty well took over. I received disability for the depression. For this I am grateful, as it pays for all my meds, treatments and doctor bills.

It seems many, or most people who have autoimmune diseases suffer from depression. It is very difficult for most of these people to get disability benefits for their illnesses, and many of them get disability for depression. My friend tried to get disability for Lupus, but of course she couldn't. She also suffered with depression, so her attorney advised her to file for disability for the depression, and it worked. The same happend to my cousin who has


Most people with depression suffer from Anhedonia, or "flat affect" (you mentioned feeling robotic) which is the inability to experience pleasure. I have experienced Anhedonia for long periods of time. At times I am somewhat better, but I wonder if I will ever be "myself" again.

After many, many years I have learned not to trust myself to make important life changing decisions when I am in a depression. People in recovery therapy call it "stinkin' thinkin".

As for being in an abusive relationship, it exaserbates the Behcet's and depression symptoms! I have been there BIG time! I still suffer from depression, but not like I did when I was with the abuser! Sometimes it's difficult to get out of an abusive relationship because we become emotionally dependent (in a sick way) on the abusive relationship. After extensive and longtime therapy I got out of that relationship. If I hadn't I probably wouldn't be here today.

It's pretty hard for us to be gentle with ourselves, but when you learn to do that to the best of your ability, you won't allow anyone else to treat you with disrespect.

I wish all of you the very best from Florida, USA!


hi jenny thanks to share I have been dignose behcets at age of 8 since I cant plan for long time part of behcets not knowing what next to preper your self I have given best part of my life to family life I have try to built and since don't work I have try to push love one so to stop them felt sorry for me and behcets take lott out life and we forget every one have problem and fitig take most of fun to live activitis don't to much question your self lets live and don't take extra I have taking to much extra and curash under nedd if you look at life we plan and work for the life we want behcets make me to lost my way kinde regarads to evry one gl


Sorru to Jenny for hijacking ur thread however wat u sed mirrored y life.

Thank you to all who has replied and to those who are yet to,

Im yet still in hosp, which is makn my fatigue n depression worse x


Gosh I have just read all of the above and wow....i can relate to all of your comments and stories...and I know that i have changed,,,i was always a care taker and now i just dont care!

my other half is a recovering alcoholic and although he tries (sometimes) he just cant get what i am going through...I had though that the change in my personality over the last year or so was just down to me dealing with our past through the drinking years and dry drunk years and that i was falling out of love and my way of dealing with it was to hole up and build a wall high enough to protect me..of course no one can do that, emotional walls are not bridges and they do not help us at all..having read all of the above I am now so not sure!

Is this my way of dealing with stress, get rid of the perceived stress or is this the BD way?

what i think i am trying to say is that we all change over the years due to may factors in our lives and with BD added to the mix things can get very confusing.....the moral of my little rant is I think that when we are making decisions we need to try and make them when we are not in the middle of a flare up and more than anything we need to talk and talk so i am talking

Keep sharing and listening and we will all get through these hardest of hard times. xx


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