Behcet's Syndrome Society
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Depersonalisation and Post-traumatic Stress Disorder

As a result of shocking things happening to me, having quite horrific symptoms and unmanageable pain for years as well as pain drugs, I found that I used a mechanism to psychologically detach myself from the situation until the pain passes as there is not a lot I can do when it is bad except accept it and not fight it. It is a good temporary measure to get around physical pain or nausea. However as I have been in quite severe pain for a long time, I am finding myself just coping, going through the motions, and I wondered if anyone else has had a kind of PTS following Behcet's episodes or treatment? And whether they feel as if they are depersonalised but not dissociated because of it?

It is a struggle to be totally 100% present in the middle of it all, have this for nearly 20 yrs, and still remember who you are supposed to be after so long. I had a bit of a freak out today when i realised that the way I define myself in my head (sign language interpreter/knitwear designer, someone who travels and was extremely sociable) and what I do, in terms of jobs or pasttimes after BD etc I have not actually felt 'like me' for years, and the BD has my personality sitting on hold, because the things that define me (being able to create music, artwork or crafts, social activities and choice of friends etc) are not possible to do when in pain as I am just riding out the flare, hoping it won't last years.

I did have to redefine myself some years back, got used to it being at that level but now its worse find it harder to keep finding out who I really am and what I do now. It is like I have been 'off work' with flu, and not really socialising, waiting for the symptoms to abate but obviously this is no 2 week thing and as the symptoms do not go, this limbo state has become a 'me' that I do not recognise, and do not really want to accept as it is below mine and everyone who knows me expectations of what I should be doing...

Does anyone else know what I am rambling about? I feel I am explaining it badly.

This is definitely not a form of depression, but is a separate detached sort of feeling.

At the moment have two bad hands, and one and a half bad feet and cannot walk properly or leave the life is a bit odd.

15 Replies

I think you have explained it brilliantly.

I had what I would call one big "episode" with a relapse followed by a gradual return to 1 year on I have redefined myself.

It is a very difficult topic to articulate I agree and I was hoping to talk this through myself professionally at some point as I heard that there would be psychological help through the COE.

I have managed to regain quite a lot of function but I know that sometimes people now find my behaviour a little "over the top" as when I can participate I get a little high on life. I think those closest to me understand.

I also agree that it isn't depression and although I am managing part time work I still feel a little disassociated myself.

I think the biggest problem is how long does each episode go on for, and how much function can be regained? None of those 2 questions can be answered can they?

We never know how we are going to be when we wake up so nothing is a given.

Im not adding much clarity but I am with you on this topic. Love Jillx


Most important thing for you probably, is to accept that your flare ups are random, and not fully under your control. To never feel a failure because your period of wellness is short lived, and other symptoms return. It is not your fault, and you are not failing because it happens. If you do return to 'normal life' including work, I realise there can be a tendency to think its down to something you did and we all try to analyse why this is happening and we all ask ourselves, 'where did I go wrong?' if we can't get better quickly.

It can be annoying when friends and family feed this and assume that a patient is brave and triumphantly in control when they recover, rather than realising that anybody who does not recover, is not a coward or a failure or are not looking after themselves, it just happens and they cannot help it.


You have hit the nail on the head hunni. I feel exactly the same and not doing much myself oyher than visiting different hospitals for various appointments. It is so hard x


Have you been deeply hurt by just one person? Or by several people?

Before I got ill, I had a huge group of very close friends. As a group there was not any one single person who felt it was their responsibility to maintain a connection with me once I found myself unable to do the things they were doing, i.e. camping, partying hard and holidaying etc. People carried on their activities but drifted away from me when I became quite seriously unwell and unable to join in.

My group of friends and myself were all in our early 30s then and obviously more interested in a fun social life outside our home, and it happens in groups that if one person has problems and drops out, often the others carry on with socialising with the main group thats left. My group kept saying to me, ''Sorry you're ill, give us a ring when you're out of hospital/feeling a bit better, and we can go out for a drink'' and of course, 15 yrs later I am still not better and lost touch.

Now I have the odd friend dotted here and there, but have not got that close to any groups of people again. I found out after my mother was diagnosed with a terminal illness, that human beings can be quite cruel and dismissive. My mother said she did not want anyone attending her funeral, who had not been in touch with her for the year before her death. So there were 7 people in total at her funeral and we were all close family, no friends at all, not even enough to fill up the first pew at the crematorium.


Just adding my bit to the conversation.

Felicity asked me what I was going to do when I left hospital and my reply was at heart I am a couch potato and am quite happy with a good book or sitting in front of the computer. We agreed that we were both pleased that in the past we had 'seized the day' in regard to travel etc because I can't see myself travelling for a long time to come if at all. So in that way I don't feel cheated - I didn't wait to retirement to travel to most of the places I wanted to see (it's a long way to anywhere from Australia).

I understand and totally agree with all the comments above. It's hard to say what defines us as a person, I know the old Lesley isn't around anymore. My mother and I were talking today about an unrelated subject - when an old acquaintance's husband died she said that stage of her life was over and she was beginning the next stage (it wasn't said with indecent haste). I always admired her spirit.

I'm rambling a bit myself now (because I've also been thinking about it) another thing I read is that it good not to deal on what was in the past but concentrate on now and the future. Mind you if your whole life is taken up with doctor's appointments and hospital stays that is pretty well defining our lives.



I would like to be able to travel more, because I don't have any relatives in this country. I have on brother, who lives with my sis in law, niece and nephew....and being able well enough to get on a plane journey of that length, and afford such a ticket is quite a rare thing. I went once for the wedding, got sick then spent one and a half weeks of my 4 week holiday in a New Zealand hospital....and thereby got diagnosed with chronic pancreatitis due to possible/probable Behcet's.

I went another 6 years after that, and two children had arrived...that was in 2006. I was sick and tired most of the time, but at least spending time with the kids.

That is 7 yrs ago now....time for another trip before the kids are teenagers.


Hi I too understand and agree completely. For me it is also to do with age. I got BD in my early thirties. I was married with one child but over the next 13 years I had 2 more children. I was living abroad and moving from continent to continent, country to country and moved house 32 times. All this with BD, looking back I think it's what got me through the first 12 years without diagnosis or proper treatment. I had to care for my family with this hectic lifestyle going on and I although suffering was on the bck burner. Now I live back in the UK, my children have their own lives and I am newly married. My life is much more stable but I think because I lived on adrenalin for so long, I find I can't cope with the BD so well. I am 62 years of age and luckily with no worries but the disease is taking a real hold on me and I have been seriously ill for the last year. My body and mind just canst seem to cope with it anymore and I wonder where the other me has gone. But, maybe it is just our bodies and personalities changing anyway through the passing of time. The only thing I am sure of is.....I AM NOT the doctors want me to be as an easy option.

Rant finished.

Hugs and Smiles to ALL



I got very sick with recurring acute pancreatitis etc and diagnosed with BD in my early 30s, I thought I was low on energy then but there is something about being younger, and being un-jaded that can make you power through....and a belief that however ill you are, that some point you must recover.

Now I am in my late 40s and I think you get worn down by familiar symptoms, and more jaded about a recovery so it hits you harder as you think ''oh no, not again!''.

But I have noticed, that you can feel more unwell in later years with more minor symptoms than you would when younger. People of my age who are 100% healthy are telling me that their ability to cope and not get so tired is slowing down, and aching joints come in with less of an ability to sleep and recharge. I think even if you are not unwell, if you have a busy life whilst younger you have more energy...and even if we were not ill, when we hit late 40s going on towards 50's and 60's we find it very hard to recharge ourselves.

So having BD for a long time does take its toll on the body and symptoms which sound minor when describing them to a GP, can sound trivial to their ears.

What was a disappointment when visiting a consultant recently, is that he announced that I ''had BD in the past, but has been symptom free and managing well for at least 10 yrs'' and of course, this is not true. If anything symptoms have increased but it is just that there is no point going to the doc to report a symptom for which he has already given you a prescription of the max amount. And knowing the ins and outs of a disease, you yourself can tell which symptoms are worth reporting and which ones you have to put up with. But it shocked me that docs tend to write down you are well if you don't report symptoms to them, but then if you do report them, they write that you are failing to handle your illness.

To avoid irritating the docs, I tend not to bother them unless there is something they can do.


I know what you mean. I went to my GP yesterday, because I cannot stand on my left leg, have contracting toes, and a problem with extreme pain in the arch of the foot and it will not go flat on the floor. He examined it and said the obvious, i.e. that it is not injured as far as he can see....I know that! Then he said I was on max painkillers (I am not, I am on half the dose the pain clinic prescribed with a view to increasing it if my pain increases, or reduce if pain is dormant) and said there was nothing that can be done about the foot.

he advised me to wear shoes indoors, and walk on it, and today it is worse than ever.

I can only go out if I am taken door to door by taxis, and had been inside the house for many weeks and unable to get around the house unaided. I told my doc that this is the last straw, I have a large lump and cannot use my right hand, but injured it in Oct and cannot get to see a doc until june 24th and as a result of the delay, the hand has permanently contracted and looks like the break has healed, but badly....I said I did not want to have the same sort of contracting in the foot and get stuck like this. I also had asked the staff at the surgery, if I get stuck is there any chance of being able to borrow a chair, or even a pair of proper crutches etc.....and they said no, not without seeing your i saw him, nad he just told me to walk on it even if it i did and i am in absolute agony.

I have no family in this country, and no friends that live nearby. I cannot even get to a corner shop unless I ask for help etc...I told the doc this, hoping to impress upon him the priority that I should be mobile, or have aids to make it easier. What did he suggest? He suggested if I am upset I should talk to a psychologist to learn to cope....I am blinking well coping, but angry cos i cannot get a single person to take my hand injury seriously, and now my leg.

Every single ailment or injury I have had from BD, has turned into something permanent because it was not caught in the early stages and I am left quite disabled because of refusal to support or intervene. If my hand had been strapped properly, I would not have lost function....and now, cannot even get any of the consultants to agree that the contracture is their department. Ortho says that they do not understand why I cannot straighten my ring and little finger and it is not a bone thing, it is probably a nerve thing. Neurology say it is an injury and so therefore is an ortho's job, and my GP is staying well out of it because he says he had already referred me and there is nothing else he can do. He will not allow me to go back onto the dose that the pain clinic prescribed, he insists what I am on is the max dose and at every opportunity just tries to stop it...the pain clinic got annoyed about that, so they very carefully wrote to him to say I had the option of taking painkillers, and that if I chose not to for periods of time I my need to go back on and increase certain meds, by about twice the amount as well....but my GP keeps telling me I am on more than the normal dose of certain things, and I know I am not because 6 years ago I was on 2 or 3 times the amount but I chose to take less, even though it meant pain breakthrough...but now this episode means my pain is increased, I cannot taper it up again as the GP will not allow it.


Hi erssie,

GO ON !! You have a rant and shout about it ~ it does make you feel better as everyone on here knows what your going through. I 'm also recovering [ if that's what you can call it] from the similar left leg goings on . The neurologist [ nice bloke he new his stuff] saw a large disc bulge and told me a lot of very long words explaining the nerves that travel down to your legs that spasm and lock your foot and leg into very painful positions. The best thing I had was the pain clinic woman visit me in my hospital bed ~ They insisted that the pregabalain tabs [which work from the brain down your nerves] should be upped to the max that I could take along with a mountain of other pain relief which work great together. Then I signed myself out of hospital [ with the help of my husband and a wheelchair] taking all the meds with me. When your at home you can help yourself to move better. The only thing is though ~ you must TELL your GP the dosage the pain clinic + tabs they let you have. OR the GP will only give you the max dosage they are allowed to give you ~ which is like having smarties for a chopped off arm!!

Warning though all GP's now have the power [given to them by the government] to say yeah or neh as to who or what you can have or see according to their GP surgery cashflows . Believe me they will actually show you how much the tabs cost and how many they can give you within their budget. If you are suffering ~ insist constantly as to how you are feeling keep making appointments until someone listens . Having said that ~ the rhumy guy and nurse at one of the BD clinics never listenened to me . So I think is firstly you have to help yourself no matter how depressed and pained you feel , as I do . Make yourself smile about stupid things everyday. No matter how barking mad you feel ~ look around ~ there are more crazy people around than you think. Have a laugh at every-one else secretly. I have a mountain of problems that happen a lot ~ look at other people on here and how they cope~ what meds they're given . Work out from the internet as to how best to help yourself first. In my experience each Dr ~ Consultant ~ specialist and GP will only treat what they can see ~ they give a small amount of time so can never listen or understand what you are really feeling or suffering from. Keep going!! [Please excuse any spelling mistakes as I'm happily on meds and can walk again!! ]

kind regards



Thanks for your long reply.

My GP knows very well what I was prescribed in hospital and with the pain clinic, he was sent a letter pointing out that although I had elected to continue on a lower dose for the moment, I was to have the opportunity to double the dose during times of greater pain or GP will ignore all that and has an old fashioned view of pain management, which an be annoying but he quite often likes saying no to something, or insist that I am talking rubbish....on the whole he is good enough to keep, but occasionally, he can be really annoying....

My OH just phoned him and ranted a bit at him about me meeting dead ends all the time, I could hear the complaining but had no idea he was talking to my doc....but all he managed to get was a new letter, and permission to have a foot xray, but said I would need to walk in myself...hmmmm that sounds very much like using A and E or triage, and am sure that uses up places that should be for far worse emergencies that need stitching etc....the GP normally fills out a form and books the appt in advance, without his proof in writing, I am just going to end up being in an emergency minor injuries walk in centre


Hi there,

I think that you have explained that well. People with BD - either through the symptoms of the condition (especially neurological), or due to medication, plus the pressures of life itself - are more likely to have neurotic or psychotic episodes. Dealing with pain can lead to states of 'getting through it' which afterwards seem strange. It is not unusual for BD patients to be unable to remember a bad flare up after the event.

I have been on antidepressants for over six years, and have experienced some deep depression/anxiety/psychotic episodes - including feelings of depersonalisation and PTSD relating to the symptoms of BD. My eye specialist has also noticed that BD patients are more likely to experience these things compared to those with other eye (opthalmolgic?) conditions.

I think it also fair to say that BD patients are more likely to experience highs and lows in their behaviour and feelings too. If you think about it, a condition that causes oral ulceration, hearing problems and eye problems in the head is likely to be affecting brain function even if there is no clear presentation of classical neuro-BD symptoms. If one has systemic issues including bladder problems in key organs elsewhere in the body it demonstrates clearly the full body presence of the condition.

Speak to your doctors about your issues, they might be able to refer you to someone who can help. I have been on Cognitive Behaviour Therapy with counsellors to help me, and also seen mental health specialists.

Hang in there, good luck.



I did see someone for CBT, but he confirmed that how I was feeling and detaching myself, and trying to cope with hospital phobia was 'normal' and said he was never going to be able to get me to less fearful if my fear was based on reality.

I have not had any psychotic episodes as such, but if I am in a lot of pain, I do have to sort of go into my head and try to ignore it or get over it...and that can take over blocks of time if it is frequent. Going onto 'automatic' is a normal human response, but should die down once the danger is over....but the trouble with certain medical conditions is that the danger or pain is recurring frequently.


Hi Erssie - I don't know the situation or the system over there but any chance of changing GP's?


Hi Erssie,

I think you have explained the crap BD brings on you all & their loved ones brilliantly.

My daughter Jaida has just had 7 brilliant days then came down with a bug of some sort & crying she asked me , " mum is that it, am I going to get sick & be in hospital tomorrow?"

I had no idea what was going to happen as none of us know the path this crap disease will take. Thankfully I think Infliximab or something is working as she is still at home, sick but coping.

We have been told to see a psychologist regularly with Jaida to help with her anxiety & pain management. I felt shitty as hell although I didn't show it as I like to look positive in front of Jaida. I know it's a good idea I just want this bloody pain to bugger off. Last weeks good health was the best pill ever.

I hope you find the right GP & get relief. I'm so thankful we have a great team behind Jaida and looking after her well.

Love Michelle xx


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