I belong to an online support community where patients, family members and care providers can ask questions of each other or find others who are facing the same challenges. One man was trying to be proactive as the spouse of a woman newly diagnosed with a debilitating autoimmune condition, and asked basic questions, such as would it be worth it to see a specialist vs. a regular internist, and what should he expect from the insurance companies? Here is my reply:

I love hearing about supportive spouses! My mom has a very supportive husband, and my sisters do as well – we ladies have terrible genes, unfortunately.

Just keep in mind that “supportive” might mean different things at different times. Fatigue and pain are the most common symptoms of any autoimmune diseases, and what she may have been able to do one day might change the next day, and then change back that day after that. Confusing, right? It will be. In fact, there are going to be other odd things about her condition that will confound her, and you. One thing that I like to tell people in my circle is that they should not start any conversations with, “Why don’t you just _______?” If there was an easy answer, we’d have it already.

My personal experience has been that it is tougher to deal with the doctors and staff than it is my insurance company. Don’t be afraid to fire doctors and look for new ones if they refuse to treat your wife (and you) as people who are involved in your wife’s care. It doesn’t do anyone any good to just blindly follow without understanding or questioning why certain things are being ordered, like meds or tests. I don’t get along with doctors who don’t allow for an open dialogue. Sometimes I will even write down a list, and when the doc enters the room, I first ask, “How much time do we have?” and then I tell that person I have a list. The good ones appreciate efficiency. And boy, read as much as you can. Get info from reputable websites, but also look for posts on your wife’s condition from people like us. There may be times when she thinks she is completely alone – but someone inevitably will confirm that she’s not crazy, and whatever is happening is affecting someone else as well.

Just as a side note: I live in a very large city, but have a hard time finding a decent rheumatologist – no one wants to go into that field because there aren’t any cures and the patients all complain. Anyway, the last time I went to see the nurse practitioner, who I was handed off to unwillingly, he told me that if I would just lose weight, the lumps in the tendon sheaths in my hands would go away. I told him I didn’t walk on my hands, so I didn’t see how losing weight would affect the lumps. I fired him.

And my final piece of advice is that I beg you, both, to keep your sense of humor. Try to find something to laugh about every day, even if it’s at the absurdity of what is happening at that moment.

What I would like to add, though, is that I hope his spouse realizes how lucky she is. Dating at my age is no picnic, and heaping complex diseases on top of that guarantees singlehood. I’ve been left by men I have been seriously dating when they realized that the surgeries would be a constant in my life as surely as I have green eyes. That’s why it kills me that every time we get to question of who is in the waiting room for when I get out of surgery, the nurses ask me multiple times, “Don’t you have someone in the waiting room?” It’s always the women who are disbelieving – surely not all men are put off by my bald head and scars all over my head from surgeries? Believe it, sisters. There is no one waiting for me to come out the other side okay.