As a follow-up to the Listen Up, Doc! Webinar I did with the S.L.E. Lupus Foundation in NYC several weeks ago, they've just posted a list of questions asked by listeners during the event. While I didn't have time to address all of the questions during the hour-long webinar, they were such good questions, we didn't want to let them go unanswered! Here are just a few of the questions (along with my answers). You can see the entire post here.
How do you suggest engaging a significant other who is unwilling to talk about her lupus to the point where she becomes angry - literally - with me? The standard response I get is "I'm fine! I don't want to talk about that! Stop asking me about that!” When I ask about going to the doctor's office with her, I get the response of "I don't like anyone to go to the doctor's office with me! I've never liked anyone to go to the doctor's office with me! I've always gone alone so it doesn't matter!" I just give up at that point and don't bother continuing the discussion. Thanks for your feedback.
It’s always tough to extend a helping hand to a lupus patient who is trying so hard to be independently strong and capable, in the face of her disease. I can tell you first hand, asking for help and accepting it were major obstacles for me to overcome! Perhaps asking your significant other to specify in what areas she feels you could help would put it back in her court. I always appreciated when my family would ask how they could help, rather than assuming that it was “x” or “y” that I needed help with. That way, I could help direct them to areas of my life with lupus where I was willing to open up and ready to accept help, rather than their inserting themselves in areas (or activities) where I wasn’t prepared to share the burden. Going to the doctor was one of the latecomers for me, too. (In fact, I’ve done another talk on this very subject – giving yourself permission to ask for help and accepting it…and one of my examples is allowing someone to accompany you to a doctor’s appointment!)
Can you speak about Lupus Limbo (i.e., your doc *thinks* Lupus but won't actually diagnose)?
I understand that Lupus limbo can be a very frustrating experience – and although I’ve never been through it myself, I’ve talked with many friends and family members who have waited way too long for an official diagnosis. My suggestions to those I’ve spoken to in this situation are the same that I would give a fellow patient that has been diagnosed:
Ask as many pertinent questions as you can. If there’s something you don’t understand or are wondering about, bring it up. If there’s something that you think might be relevant, but aren’t sure, ask about it. Whether or not you have an official diagnosis doesn’t change the fact that you should have a complete understanding of what your body is going through.
Push for a plan – try to get an idea of where you and your doctor are headed. Is he okay treating you without a diagnosis? What does he plan to do differently? What is he looking for that would prompt a diagnosis? Maybe the lack of diagnosis, in your case, doesn’t change anything for him. Maybe it changes everything. Whatever his answers, you need to know what they are, so that, together, you can continue to work toward wellness, diagnosis or not.
Don’t let the lack of a diagnosis stop you from taking the steps you need to start living well. If you suffer fatigue, take a nap. If you have joint pain, minimize it the best you can. You don’t need a label to acknowledge that your symptoms are real and debilitating. Take care of yourself first, get the diagnosis second.
I'm newly diagnosed and am having a hard time sharing my illness with people. Is this normal? I don't want people to treat me differently.
It’s absolutely normal! It can be so challenging to introduce the concept of you with a chronic illness to others – it’s hard enough to wrap your head around it yourself. I remember very specifically struggling to figure out who I was, now that I had lupus. I didn’t look different, and, like you, I didn’t want others to act differently around me, but everything was different – from the way I felt the moment I woke up to the moment I went to sleep. And in my experience, the sooner you can acknowledge the change, and begin to embrace it rather than fight so hard against it, the sooner you can start feeling better. The more comfortable you become personally dealing with lupus on a daily basis, the easier it will be to broach the subject with others. From there, you can begin to re-establish your identity with this new illness in tow.