I would like to find someone that I could talk to about my lupus and the feelings that I have and was wondering if anyone knew where I could find a list of social workers that may deal with lupus or chronic illnesses.
Are you located in the US or UK? Are you treating with a Rheumatologist? If so, possibly your pcp or Rheumy may know of someone who can help you. Also there may be Lupus support groups around you that you are not aware of.
I am sorry your having a tough time dealing with things. This board and the people here have been so much help to me. Of course I can not see them and sit with them but when push comes to shove and I need a ear or good advice someone always steps up to the plate and helps me out.
I love this forum and all of the people here as well. Come for support and feel free to rant and vent all you want. You will be surprised what you can get out of this forum and how good the people here make you feel. Most of us have Lupus so we really understand what your going through. We get it like most people dont.
Best of luck to you. If your in the USA maybe the LFA can also suggest someone who can help you for support.:wink2::wink2:
Honey we are better than any social worker you could get lol. I am not sure that there is one place to find someone like you are looking for. You can try the mental health field as they deal with all kinds of issues and I am sure they have talked with lupus patients also. In the meantime I do hope that you give us a chance to help you whenever we can as we all understand what you are going through. We have a chat room that you can get instant feedback and I would be glad to chat with you from time to time just let me know when.
I know it is hard to have all these feeling and fears and no one to talk to. I lived that way for about 14 years. It can be pretty heavy at times. It sounds like you need a release valve, and no matter what you pick make sure it works for you and not the other way around. Don't let it start to take charge of you and change you to be what they want you to be. You have lupus and it is a chronic pain in the bottom there is no changing that one, not yet anyway. It bites to be in pain all the time and so tired that you have to make an effort to just go to the bathroom across the hall.
I hate that I have to take a hand full of pills in the morning just so I can feel like doing the dishes (and sometimes that feeling never comes but they have to be done). I do hope that you start to feel better soon. I just thought of something have you done a depression survey with your general doc? If not you might want to ask to do one. I thought my gp was crazy when she prescribed an anti-depressant for me but in all honesty it has helped a lot to get me back to my old happy self again. It might not be what you need but it is worth a try right?
I know what you are going through. I finally decided that I needed help coping with some of my issues and could not always express them so I needed help.
Having never done this, I called about to psychiatrists in the area, spoke to the receptionists or schedulers and explained what I was hoping for.
On my third call I found a woman who listened to me then said that the best place was to see the main Dr and explain to him what my issues were and see what he had to say. Her understanding and compassion was a sign of how the office was in total.....
It was the best step I ever took.
I met with the Dr, we spent an hour together and he referred me to a psychologist in his office who deals with people who have chronic and/or life threatening conditions as his specialty.
We met weekly for 2 months, then bi-weekly for 2 months, now only as I need him. He always saves time in his schedule to handle occaional emergencies, and provided his personal cell to call as needed.
This isn't always going to happen, I got lucky. There are therapist who deal with people who have our kind of conditions out there.
I think the staff is reflective of the office, so I always start there....If they have a second to listen before an appointment is even scheduled, then chances are the Drs will do the same.
Believe me this site and the people here are a godsend and I would not survive without it and them, but sometimes you need a face to face with an expert.
Good Luck! See if there is someone out there, but do not stress over the lemons and pits.