Hi my name is Sharon I have recently been diagnosed with SLE.
I pretty much diagnosed myself initially, I know that sound crazy but I had not been feeling well for the past couple of years and bought it up to my doctor I believe I may Lupus. I know the symptoms are tricky but with all the issues I had been having I thought I would bring it to his attention. He ran blood work and told me that based on the results I may be on to something. I was referred to a rheumatologist and with further testing I was diagnosed. (That gut feeling that we get should never be ignored) Anyway I have not gotten the support I thought I would have from my family. My husband thinks I am lazy when I tell him how exhausted I am and how much pain I am in. I am on Plaquenil and prednosone. The plaquenil exsabated the fatigue that I had been feeling and I haven't felt much of a difference while on it. The hardest part has been not having support. I don't think my husbands seems to care since physically he sees nothing different. My pain he cannot see and my fatigue he cannot see. There are days he wants me to do things and I can't because I am so tired, he gets upset and carries on. There is no sympathy whatsoever on his part and so I go on with my life as if I was not diagnosed at all. I take my meds and try to stay positive but no support makes staying positive impossible at times. I hope to find the support I don't have at home here in this forum. Take care...
hi sharon, and welcome.
i am glad that you did not give up seeking to find an answer to what is happening with your body.
unfortunately for some of us the road to diagnosis is not an easy one.
as for support .......
many males do not understand what they cannot see.
i am a male myself, so i speak from experience when i say ....
if something is outside there concept of reality, it can be difficult for them to accept.
faith is not easy for a lot of people .....
and what you are asking is for your husband to have faith that ....
he has been unable to protect and look after you.
this is not easy to accept, for it means that in his eyes he must admit to failing to protect you.
this was the hardest thing for me to accept when my ex wife became ill .....
that all my attempts to protect her were not enough.
now that i am also sick .....
i understand things in a different way.
my ailments are different from my ex wifes,
but i now have an understanding that i could not comprehend before.
please take the time to read a few of the older posts .....
they are our personal experiences with lupus.
and hopefully we can offer some of the support you need :)
First of all...STEVE, THAT WAS SO BEAUTIFULLY EXPLAINED AND POIGNANT! Thank You So Much for providing that insight into a male's perspective.
Secondly - Sharon, welcome to our family where everyone here understands and we will provide you with support, comfort, information, and be a place where you can express your feelings freely with no judgment...just understanding.
I often suggest that we need to educate our loved-ones just as much as we educate ourselves about this disease. Information is the only way to combat their lack of understanding and will assist them in becoming supportive. There have been several books written specifically for the family and friends of Lupus patients that provides great information and advice. Especially in the area of "Fatigue" which is one of the most misunderstood symptoms of our disease. I always quote the way a dear friend of mine described it: "Like lying under a lead blanket". Our fatigue is absolutely debilitating and has absolutely nothing to do with being lazy. We would much rather be up and about doing all of the things that our friends and family want us to do...we simply just cannot do it. So, it is important that they learn about our fatigue and know that it is not a choice that we are making, it is a real and devastating symptom of our disease.
Here are a few books that will help your family and friends"
The Lupus Book: A Guide for Patients and Their Families by Daniel J Wallace:
The Lupus Encyclopedia: A Comprehensive Guide for Patients and Families
Also, please invite your husband or any other family member to come here and read some of our topics, read the "sticky" sections at the top of each page, and to ask any questions that he may have. We would gladly also help him/them in any way that we can.
You may come to us at any time and we will be here to help you. I wish you the very best.
Peace and Blessings
First let me say welcome to the WHL family! We are glad you found us! Next I have to say that those last two post are exactly the kind that brought me so much comfort when I first found this place!
It is so hard being where you are right now. Being sick with a disease no one can see or understand. I sat in a hospital room about a year ago with a friend while they tried to figure out what was wrong with her. 2 things on the table were cancer and autoimmune disease (AI). The oncologist came in and my friend said "I can handle anything but cancer" and the oncologist said "everyone says that but honey there are many things worse. For example AI diseases. Most cancers we can treat. AI disease we can only treat the symptoms of and your family and friends will give you no sympathy for those. Be careful what you wish for". I started to tear up in my chair because I knew she was right. I understood what she was saying.
the good news is that you found a place where there is a place where you do get support and understanding because we have been through it. Welcome to your new extended family