Powered By
Now that I have a a diagnosis of borderline lupus and am 22 days in on medicine hydroxychloroquine… he seems to think all is fine. Do I cry with pain or symptoms - no… because it doesn’t help.
I was alone in pain before knowing… now knowing I do find relief but the aloneness is worse as he sees me as fine because he cannot see it. Anytime I find something that connects to this diagnosis that I have had a long time and things are clicking in my mind… he barely listens and just says sorry.
We have… read more
Jill, I’m so sorry you’re feeling alone and frustrated. My husband also doesn’t understand, but I have to tell myself I don’t really want him to understand because if he did he would have lupus as well and I wouldn’t wish lupus on anyone. Like you, I have had symptoms for a long time. I felt like I was complaining and just being lazy. It was bitter sweet to finally get a word to call it and know there is a legitimate reason. I think men in general have a hard time showing their feelings and instead just show none. My husband is scared and gets quiet and says sorry a lot. It has affected our relationship because we like to go a lot and now I can’t as much. We are both trying to learn how to adjust to this new unwanted life style. I’m using this support group for the emotional support he can’t give me and it helps a lot! He gives me so much support in many other ways that I couldn’t do it with it him❣️I feel your pain and if I can do anything to help you please feel free to reach out. Sending hugs your way 🤗
I suspect most of us can relate, Jill, as the invisibility of our disease makes it hard for family and friends to understand what we experience. There is terrific support here on MLT, and maybe more knowledge about the disease will help your loved ones relate better. You may want to encourage him and others in your life to learn about it.
Meanwhile, you have support here from us, as we get it!😘
Jill, I included quotes from my husband about his perspective in my book, too, which your husband may find helpful. You may be able to find it at your local library.
Nice to meet you @A MyLupusTeam Member. As @A MyLupusTeam Member said, education is the key. Checkout some newer lupus books from the library about lupus to share with your husband. The Lupus Encyclopedia has a chapter on the subject of support. I would also suggest you invite your husband to join you at your next appointment with your rheumatologist. This helps my husband understand better than anything else. He asks questions and shares things that I forget to mention. You might also want attend the next lupus event in your area where he could meet other spouses and and family members to learn how to better understand the "new you" with chronic illness. I wish you both all the best.💜
Thank you all. He is a very supportive husband but inside to me doing things at 3x normal speed and I am at 1/4 of normal speed now.
Join
Your Privacy Choices
