3 Things I Struggled With After Being Diagnosed With Lupus

When the doctor said, "you have lupus,” I felt like the floor dropped out from underneath me. At our first appointment, he’d told me that lupus was his suspected diagnosis, so I had read extensively about it. I knew what it meant for him to say those words.

It meant that my body was fighting itself, sending my cells – poised to attack – in the wrong direction. I was under friendly fire. I felt confused, scared, disheartened – and that was only the beginning. In the days and weeks after my lupus diagnosis, I faced 3 big struggles.

Overwhelming information about lupus

Lupus isn’t very common – 1.5 million Americans are estimated to have it – but there is plenty of information about lupus if you go looking for it.¹ And, you don’t always land on the best information when you’re first starting to learn about a disease.

First, I learned that it’s not just lupus, it’s called systemic lupus erythematosus (SLE). (At least, that’s my case – there are several kinds of lupus.) Then I learned to pronounce erythematosus. And that systemic means my whole body – nearly every part – can be affected. I learned many things that weren’t particularly reassuring.

One statistic that kept coming back around in my mind was, “80-90 percent of people with lupus can expect to live a normal life span.”² I couldn’t help but think, 90 percent is not all.

Feelings of fear about lupus

In the first several months after my diagnosis, I was terrified that my lupus would turn into something catastrophic. Lupus has devastated many people, and I was reading about many bad scenarios. This is one reason that doctors discourage you from spending too much time on Google. But I have always wanted to have as much knowledge as possible on every big issue in my life.

And then there were the pamphlets that came with my medications. They are long and awful. Do you know that azathioprine increases your risk for Progressive Multifocal Leukoencephalopathy (PML), a disease that attacks your brain?^3,5 The risk is small, but your doctor still has to (or should) tell you about it. When you’re already experiencing fear from a lupus diagnosis, it’s hard to face more fear about your meds.

Many lupus medications are drugs that no one would choose to take if they had another choice. I was sick and desperate, yet hesitated to start the meds. It felt like the epitome of being stuck between a rock and a hard place.

The cost of lupus care

Oh, and those terrifying medications? They are EXPENSIVE. While the price for medications varies widely in the USA depending on where you live, what insurance you have, and what coupons you utilize, I found myself paying $300 a month for hydroxychloroquine. Before the insurance adjustment, my azathioprine was close to $700 for a 3-month refill. And my recent Benlysta infusions are just over $6K each (thankfully they do have a copay program).

So not only did I need to take daunting medications, but I had to pay outrageous prices for them. It was distressing. And that was with “good” insurance, which is out of reach for countless Americans. These costs put a severe financial strain on many people with lupus.

Trying to overcome the struggles

All of these factors are detrimental to someone that’s just been diagnosed. It's essential to get lupus under control quickly in order to prevent long-term damage, but how can we do this when we feel afraid, don't know where to turn for quality information, or can't afford treatments?

There are many good resources for lupus (just being on this website means you’ve found one of them). I suggest looking for a support group, asking your doctor lots of questions, inquiring about financial aid when you need it, and seeking support from friends and family.

And be encouraged, because huge strides are being made for people with lupus. Dr. Donald Thomas, the author of the Lupus Encyclopedia, wrote, “My clinic is now full of SLE patients who are in their 70s, 80s, and even 90s. This was unheard of a couple of decades ago.”

I wish I had heard things like that when I was first diagnosed. There may be a lot of struggles with lupus, but it's comforting to know that things are improving.