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dont know where to turn?

784 Views 10 Replies 10 Participants Last post by  elle-co
I am sorry but I need a rant! I have beome increasingly ill with the SLE and Crohns disease and as a result my mental health is suffering badly.I dont feel I can talk too anyone as I feel I am going completely mad.:mad: I found a few topics on here about depression being a big part of lupus and I never knew it was a part of the condition.The reason why I am posting on this thread is because when I tried to talk too my parents about it they started going mad at me for coming on this site looking into things that are not there! It is a real problem for me and if I didnt come on here I would not have anyone who understood what I was going through.I dont know what to do or where to turn can anyone offer me any words of wisdom please??:sad:
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Hello there,

I'm sorry to here you're doing so badly right now.

Yes, depression, anxiety and congnitive problems are all very well recognised parts of SLE.

Depression can be part of the disease process for some people, for others they can become depressed through feeling so rotten and in so much pain for an extended period of time.

Either way, those feelings are very real for the person suffering from them and should not be ignored at all. It is very important to broach this subject with your doctor.

It is already very hard to deal with a condition that can, at times, be very debilitating but if you are not mentally strong enough to do so that makes it so much worse.

I'm sorry I don't have any concrete answers here but this is really something that you have to discuss with your docs and ABOVE ALL something that you should in no way be ashamed of.

hope that helps a bit,

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Talliex, If you are feeling depressed it would be good to get help. The longer it goes on the harder it may be to treat. Also why suffer any longer than you need to. I am sure your Mum and Dad are worried about you, but they need to think of your needs here. My Daughter is probably lucky with her Lupus etc. because of having a Mum with it. I view it that although she has it and I wish she didn't, there is no use going into denial. Take it on board, do what you reasonably can to help yourself with out getting obsessed, and try to find some things to enjoy. (Not easy when you feel bad, I won't insult you by pretending it is)
Not only are we here for you but would be happy to share experiences with your Mum or Dad if they want to at any time.

Do you have a really good GP? A good GP is very important in Lupus, and if you are not being well supported by yours it may be time to find another.
Good Luck to you, and keep on posting. You need the help here and we like you being here.
x Lola
Hi Talliex

Is there any way that you can drag your parents along to an appointment with your rheumy? Mine actually insisted on seeing my husband so she could explain to him how this disease works and the effect it has on our emotional and mental health. Most people don't even know what SLE is and it might help.

Good luck anyway, and I hope you find even a friend you can talk to.

Love Rose

I am sorry you are feeling so bad at the moment. You parents are probably just worried about you, but unless you have experience of Lupus sometimes I do think people have a hard time understanding it. I sometimes have a hard time understanding it myself. I feel I am quite lucky in that my husband is great, that is because he is living with it along side me. He is quite an understanding and sensitive man (cry's at the emotional bits on the TV), and after having a long bout of back pain recenty he actually said, "I now know roughly how you must feel and why you have to take the tablets you do" Aw Bless him!

I believe depression can be a part of the lupus and I agree with Lola the longer it is left the harder it is to "get on top of". I suffered with depression after I lost three close members of family in very quick succession and I didn't want to admit it and I left it until it erupted and I became very angry and frustrated. If I had sought help sooner I may have avoided the angry bit. Counselling may help too so that may be a thing to discuss with your doctor. Also see if there are any lupus support groups in your area (contact Lupus UK) this will give you a chance to meet other lupies and chat.

Maybe Rose's idea of getting them to come along to your rheumy appointment might be good. Your rheumy may be able to explain to them this in's and out's of Lupus and how it can affect you.

I hope that you are feeling better soon, take care and sending hugs your way

Claire xxx

PS this site has been a life saver for me, everyone is so helpful and offer good advice (because they know how it is). Stopped me from driving myself nuts once or twice :)
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Thank you all for your positive feedback. My parents have had lupus explained too them by many different people including my reumy.They just cant deal with the way I am getting depressed and they dont understand why so they get really angry with me.I have been too the docs today and he is going too arrange some counselling sessions for me rather than throw more tablets at me which is good.I really hope these sessions will help.I will keep you all up to date with my progress.

Big hugs and well wishes too you all x x x:)
Hi Talliex

Just wanted to wish you all the best. You sound as if you are trying to do all the right things to help yourself. Obviously sometimes it is not as simple as that, unfortunately.

I am sure that your parents are frustated, it must be very hard for them to see you suffer and be unable to 'fix it'. Sometimes fear comes out the wrong way.

I hope the counselling works for you and I am glad that your doc is helping.

Let us know how you get on.

Yes depression is apart of the sle. I have sle and depression. The doctor waisted no time putting me on them. They have helped with a lot of things. I still have problems with memory but it is something I am handling for the time. If I develope more problems I will work with my doctor for the best answer.

I am not sure why people are mad at you for coming on to the site, it is the most informed, most understanding, most supportive place I have ever been. I don't not think they understand the site. Have you offered to show them the site as there is a place for them on here also. You might ask if the problem is that they are affraid you will pull away from them. I have found that there are 3 ways family and friends go 1) they are scared of the site. That we will brain wash us to believe something that is not there. 2) they are understanding and supportive that you have others like you to talk to. 3) They could care less either way. They want no part of this site but don't care that you seek more information. It all comes to the same place they just don't know how to help you and keep you safe and pain free. I know my parents would of done anything for me, if I ask them to. Neither of my parents had the chance to get on a computer or to see the site and had they, they would of supported it like I do. This site is not only a life saver but for many it is their only way to reach out to other like them.

There is no easy answer for your problem all you can do is what is right for you and hope that you can find a way to show them what a good choice you have made. Whatever happens we are here for you.
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Hi Talliex! :hello: It takes alot of "gitty up and go" to discuss mental illness with anyone. To discuss it with family members is just down right exhausting for me.

I have suffered with depression and anxiety since childhood. That was there long before the lupus. Once my disease became active (overactive!) the change in my mental health was readily apparent to me and my family.

The bouts that I experience come on suddenly, are very strong, and overwhelming. If I did not have the guidance of two mental health professionals (a psychiatrist and a psychologist) I'm not for sure how I would have gotton through some of the worst of it. There is a big difference between the depression I have felt always, and that the lupus brings on.

Talking to my mother about my depression was always such a headache. :smirk: She was of the generation that beleived mental illness was some sort of personal shortcoming, something that could be "gotten over". She also beleived that if something was wrong with me, it must be her fault, and she was very defensive in the beginning. I took years to convince her that a) it had nothing to do with her, and b) I had no more choice over having mental illness anymore than someone diagnosed with diabetes, cancer ~or~ LUPUS. That "illness" part just eluded her for years.:explain:

Medication and therapy work great for me! It took a few years to get the meds dialed in just so, but I have been stable for over 5 years now on the same dose. It's a journey, but well worth it. :p

Be Well
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Hi Talliex,

So sorry to hear about the nightmare (illnes, depression) you are going through and the lack of support you are getting from your family. I (husband of a 34 year old SLE diagnosed lady) think that especially in such times recognition of your problem is already half the problem solved and the first step is for you to realize that you are not mad and the depression and all the related symptons are due to your health condition and possibly the medication you are on.

However, it will take time to recognize lupus for the world around you. First of all you need to find the right doctor. Don't settle for someone you don't have a connection with, trust or someone who doesn't recognize your situation. Steps you could take after that is to try to take your parents (or maybe first your mum or dad - whoever is the closest to you) to that doctor that you will find who can help you. After all, doctors still have that power that whatever they say is true, especially for the older generation, so your parents might be willing to listen to him/her.

And again, you are not mad, it is just symptons of the medicines and condition/disease (SLE) you are having. These could be; craving for food; depression; distrust to everyone around you, especially the close ones; gaining weight; fatigue; not able to concentrate; not wanting to have contact with everyone; moodswings; etc. etc. (I know them all because of my wife who recently went through a flare up after four years of remission).

Now, this all doesn't sound too nice I guess, but don't forget, all these states of mind are temporary and will pass (please never forget, write it down somewhere so when you are in a critical situation it could help).

Please don't be ashamed of your condition as well. It is there, and it won't go away right now. It is part of you, so try to give it a place. Maybe a specialized psychologist could help you, or maybe already a friend, a priest, or whoever who understands you and can offer you a listening ear. Please know that some people are willing to help, but just haven't got a clue how, after all SLE is not an illnes that is often talked about. So just try to help them with help you. Be forgiving when they don't understand or make mistakes, and try to look at their intentions.

Well, give all above please a thought and don't be afraid to ask here if you have more questions, since you are not the only one, and you are not alone!

Please take good care of yourself Talliex
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Hi Talliex,

Depression has played a huge part in my life over the past year, yet it is the hardest thing to talk about with my friends and family. people who have never experanced it find it so hard to understand. :sad:
You have made a huge step in the right direction by talking to your doctor and I hope the counciling sessions work out for you.
take care of yourself

Elle x
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