Does feeling guilty about having this illness sound ridiculous?

[karlyt]

I recently visited my Neurologist after having some extreme flares caused by my CNS lupus (epilepsy). Is there anyone else who suffers with what she described as "non-epileptic seizures?" It is believed that around 30% of epileptics have these types of seizures, and it is down to suppressed emotional issues. I am an incredibly deep person, and do not, under many circumstances, enjoy sharing my problems with anyone. I don't want their sympathy, and it makes me feel as though I am craving it. Does anybody else have issues with guilt when laying all of one's problems "on the line" (so to speak)? And do you believe that a build up of guilt can really cause so many psychological problems? No matter what reassurance I get from my family, doctors or friends telling me that I cannot help being ill, it doesn't seem to sink in. I'm now being referred to a neuro-psychologist to help talk through my issues... This illness isn't going to go away, and no matter who says it, I'm always going to feel guilty. How on earth is this going to help me???

[megs_tom]

Aww bless you! But yes I can totally relate! I bottle everything up but I do think it has an affect on my mood! I contacted my student support office at my university for support with my studies and the lady told me about counselling services, I was taken aback. She explained that she wasn't suggesting I needed counselling but that people going through a diagnosis (as I am) or who suffer with an illness often find talking to someone helps them. I considered it but then all I could think is how I didn't want to go and talk to a counsellor and burden yet another person with my problems maybe I should go but I just feel uncomfortable about it! I only really speak to my partner and my mam about my symptoms but I tend to keep how I am feeling emotionally to myself as 1) I don't want to burden them and 2) I don't think they would understand! I feel guilty that I can't do the things I used to be able to do, and I often think to myself that have bad choices I have made in the past made me this poorly, is it my fault, did I do something wrong. Please go and speak to this psychologist, it can't do any harm can it? Especially if you are having seizures due to it. Good luck and best wishes xxx

[karlyt]

You've hit the nail right on the head there, I know exactly what you mean about burdening my family, friends and even strangers with the problems I face. Along with not being able to do the things I used to do too. Having to leave university because of the constant issues that accompany the rest of the rubbish that comes with lupus, just made for a feeling of failure and I often wonder if something I did or a bad decision decided my fate. Thank you so much for your advice by the way, and perhaps, it may be wise to take some of your own advice and see a counsellor. It does kind of make you feel a little bewildered, maybe even "needy," I tend to feel awful talking to my mum and partner about it because they get upset at seeing me break down. I hope that for your sake (as well as my own (not to sound self-involved)) that we both take your advice. Things can only go up for us both from here, if we're both feeling as low as we are, right? Good luck for the future xxx

[megs_tom]

I meet with the lady from student support yesterday and she said to me 'do you tell your friends at university what your going through'. I said no, I have given them a sort of brief overview of my problems but do not like to go into detail, I just say I am fine even though I am not. I had to stop there though as I could feel the tears beginning to form and did not want to have a breakdown infront of this woman. I have my breakdowns when I am alone and that way I do not have to explain what it is I am crying for (as this can sometimes be the grieving of the old me and my worry that my life is over already and I won't be able to achieve the things i wanted to, and I don't think people understand these worries) and I also don't have to feel needy etc. Maybe you are right and I should take my own advice (I'm afraid I am one of these people who are good at giving at advice but not so good at following it!) for my sanity if nothing else. I guess that is what the service is there for. Thank you. xxx

[karlyt]

I share the exact same problem... give advice but never take it. I had to give up university because of my failing health, so I would say, just remind yourself of how far you have come, and how strong you are as an individual to be where you are today despite your daily struggles. Not many people would be able to go what you (I guess I should say "we" as well haha) go through day in day out. Along with that, it seems that you are selfless enough to not want to burden those around you, and that makes for an evidently caring and wonderful human being. Strong, determined. Never forget that. And if you're unable to talk to people face-to-face, you always have this place to vent your frustrations, and you can even cry on the other side of the screen and nobody will be able to see, to save the embarrassment! That's what this site is for, I know it has certainly been my saviour since discovering it. I hope things improve for you soon! xxx

[megs_tom in reply to karlyt]

So sorry that you had to give it up I am so pleased this is my final year as I don't think I could go on any longer than that! Thanks so much for your kind words, they mean so much. Think we are all strong, caring people for what we go through each day and think that it gives us an understand and empathy for others that maybe we would not have if we had not suffered as we do. This site is my lifeline. The amount oftimes I have posted and have been in tears is unreal, but I haven't had to explain myself to anyone. It is a communtiy of people who truely understand and that in itself is priceless. Take care and best of luck xxxx

[Tigerlily4]

Karly, it's not uncommon and quite reasonable not to want to share and not always appropriate anyway. Who wants to be defined by a disease after all?! I only tell people on a "need to know basis" other than close friends and family. Even then there will be times when we don't want those closest to us to be burdened by knowing exactly what we're going through as it makes them feel not only guilty for being well but also totally helpless to do anything to make things better. As you say, this forum is an excellent place in which to seek comfort at those times. Hugs x

[NickyB]

You just described me down to a T. I wouldn't even tell docs any of these feelings. Guilt & I also feel ashamed. Not much more I can add to what you've said. I just can't talk openly about these things

[irenestephen]

I have been going through the 'guilt and burden to the family' routine for quite a while. As with one of the above answers I too only told those family members close to me that I had lupus and it is only quite recently that I have told people the real illness I have and not put it down to 'a lot of different things that catch up with me now and again'. Diagnosed 14 years.

During a stay in hospital with a flare up that took away my ability to swallow temporarily I really hit rock bottom and it was my rheumatologist who found me and took upon herself to get me some immediate help.

I now take anti-depressants (I have had to admit I need them which took a while) and have been going to see a clinical pshycologist. The feelings of guilt and that I am a burden on the family are still there. but her . and the rheumy. have told me that because lupus is such a wide spectrum illness that it has been found that lupus and depession/guilt go hand in hand.

My mantra is 'I am not disabled but a person with a disability' and if I see someone away to do the 'there, there - pat on the back routine' I cringe and can';t get away quick enough. (Which is not easy since I now walk with 2 sticks!!!!!!!!!!!!)

I feel like I am climbing a mountain and sometimes I get near the top but sometimes I am stuck at the bottom and can't get moving at all! (Bill Oddie explained his feelings like a big black dog chasing him and sometimes he manages to run and sometimes it catches him up).

This forum is a life line because we are all facing the same things and for me personally the fact that we are all 'faceless'. It is hard to explain.

As has been said when you feel at rock bottom there is nothing to loose by talking to someone - that decision has to be a personal choice but I don't know what the easy answer to your question is except remember that you are not the only one who feels the same as you do and take some comfort from that.

Take care - Irene x

[megs_tom in reply to irenestephen]

I slip in and out of depression all the time but I won't go and ask for anti-depressants. The main reason being when I was prescribed them 3 years ago, I took them for 3 weeks and then lost a big patch of hair. At the time the doctor thoguht it could have been caused from the tablets, though I know think it was just early signs of whatever is wrong with me. But it was enough to put me off them. Also my mam is manic depressive and has been on and off anti-depressants for a lot of years now. I have never seen an improvement in her mood from taking them and she has just felt worse health wise when on them. Maybe one day I will have to admit to myself that I may need some help in that department but for now I am in denial.

I totally understand what you mean by being 'faceless' on here. Not having to speak the words to people face to face is so much easier. I feel I can say a lot more through a computer screen to the lovely people on here than I can to my friends, familys and strangers. Often the words are there but are so heard to speak and for me never come out the way they were intended.

Best wishes xxx

[Herb]

I often feel guilt for spending so much time preoccupied with all my medical issues.

I am having some intensive physio at the moment, I also go to weekly warfarin clinic, and just lately dealing with the fact that my osteoporosis treatment has been withdrawn over safety concerns.

There is an action plan put in place for this, which I basically had to organise.

I went to the solicitor a couple of weeks back to update my will because I never know when the next life threatening emergency will strike.

I even made plans for my funeral and spoke to my spiritual adviser about it.

I realised that if it was someone else that I was caring for, partner, parent, child, there is no way I would feel guilty for spending time on their care But when its me... its WR~ONG!

But it isn't, is it.

[Herb]

Also, you write"

And do you believe that a build up of guilt can really cause so many psychological problems?"

Guilt can lead to feelings of shame and unworthiness, stress, even, but guilt isn't going to cause seizures or lupus.