Anyone else feel as though living with lupus gives them depression and loneliness?
My family just don’t understand my condition and how much it effects my life. They call ‘lupus’ a label for my symptoms.. it hurts they when say this it really does. When I try to speak to them about it they don’t want to hear it.
I don’t have many fiends I can talk to either as they don’t know about my condition.
Fed up 😢
I'm sorry you're feeling sad Imzi. I think that it's really hard for them to understand, particularly if you "look" well. I also sometimes think that the ignore asking about it because they'd prefer you didn't have it. My husband works in London and is there s lot in the evenings and my boys are both at boarding school..so I know the loneliness. However, it does mean that I can take things at my own pace during the week. My husband is kind, but cannot possibly understand how horrid this can be...and my boys simply don't ask..because I think..they don't want me to be ill. Can you sit your family down and tell them how you are feeling? Tell them that you need their support. Friends are difficult to talk to about illness...I hate people knowing. Use the loveypeople on this site for support...but I would also try to explain how sad you're feeling to your family. X
Hello Imzi. I’m so sorry that you are struggling with these awful feelings. Because Lupus is one of those serious, chronic diseases that is often invisible to the world, most people do not want to talk about it. Most people, including your own family and friends, have their own lives which include enough stress and difficulties for them to manage. The cold truth is other than our own parents and perhaps one or two others really want to hear about or get involved in ours. If we constantly complain they will surely head for the hills. In some cases just a little too much talk, and we will be perceived as needy and weak. Either way, we become less and less ‘fun’, ‘interesting’ and ‘loveable’. That is definitely enough to make one depressed, and lonely. I have always felt that isolation is my biggest most powerful enemy. How can you ever live your best life, as limited as that may be by disease, if you are living in isolation?
It has taken me a lifetime to begin to understand how important it is for me to share my ‘diseases’ with the appropriate people. Those are people who share my disease(s) first hand. This forum would be a good example. My doctors should always be willing to listen, especially to new information. If they are just too damn busy for a reasonable amount of time, it may be time to move on if you can. Don’t forget there are psychotherapists, physchiatriats, group meetings whatever you can tap into. Depending on where you live you may find several choices, but whatever you may find just keep in mind that you will be among people that are there because they want to discuss the same things that you want to talk about. BTW, your doctor’s office is a good place to check for the names of group meetings focused on your disease.
Just as an aside, I am now 68 years old and was born with a rare and serious Primary Immune Disease. As a result I have developed many autoimmune diseases throughout my lifetime including Lupus. I still struggle as you do, with loneliness and depression but I fight the fight because there is no other way. I must live alone each summer unfortunately, so I am currently working on finding a small, senior dog to love and keep me company. The job never ends but the alternative is not acceptable for us... right, Imzi ? You are on my team now.
Hello imzi
There will be plenty of people on this forum feeling exactly the same I for one are one of them. I have a great family around me but after 20 years of hearing me say I’m tired I need to go th bed, I’m aching all over and I feel so ill I guess it must be just as frustrating for them too especially when you look like there’s absolutely nothing wrong with you! That’s why invisible diseases are so depressing, no one sees what you are feeling, but I do have to mention that as long as you log on to this forum you are never alone! There are Lupus Warriors fighting the good fight every day(all amazing individual people I may add!) on this forum! We all are surrounded by many family and friends but that doesn’t stop us all feeling alone sometimes. Try not to let yourself get too down. Good luck imzi and be strong, we are all walking beside you, you will never be alone.
Wolf_1🐺🦋😴💤
Hello imzi
Having a chronic disease is very depressing and no one knows better than all of us on this forum. I’m sorry your family is not supportive of what you are going through. Maybe bringing them with to the doctor or having an educational sit down with them would be beneficial? As others have commented maybe a therapist can help as well.
Keep fighting
💜
Sorry you are feeling like this it is such a tough illness as caus we look well and get on with things as normal people don't understand they think you're fine. I hate saying to friends if I don't feel well or am tired they are just like are you coming down with something? So try not to mention it. People don't get lupus at all unless you have it. I don't know any one in my area with it either so you can feel isolated. Keep your chin up hope you are ok.x
Hi imzi ,
I'm sorry to hear that you are struggling with feelings of depression and loneliness at the moment. Is there a reason that you haven't told your friends about your condition? Do you think it could be helpful to discuss it with one or two of them?
We have a blog article about coping with depression and anxiety which has some advice and information about the support services that are available - lupusuk.org.uk/coping-with-...
Doctors don't listen, so frustrated
Frustrating Rheumatology appointment 
Frustration of having to wait for surgery ☹️
Done and frustrated
UTTER FRUSTRATION
