I am not Imagining my illness, I have lupus. Having lupus is terrible. It affects your entire body and turns your life into one giant, sadistic guessing game. Something triggers your immune system. Turning it into Jigsaw from the Saw horror movie franchise. It then forces you to solve a series of complex mental and physical challenges. All in order for you to stay alive. You just never know when Jigsaw will pop his freaky little clown-doll head back into your world. Just to force you to go through it all over again. You are also going to be faced with living in a society that is not always accepting of your illness. Which can often cause just as many hardships as your physical symptoms.
While this is all very harrowing, it’s certainly better than the alternative. The alternative
is having all the symptoms of a disease like lupus but not being given a diagnosis. You get the same limp, same lung problems, same pain. But instead you’re relegated to a corner where you are neither seen nor heard. You get to be traumatized by a freaky ass clown-doll that looks and acts just like Jigsaw. The difference is that you didn’t get copyright approval so you have to call him “a clown-like puzzler.”
You don’t get the disability insurance or a legitimate reason for missing that day of work. You get awkward shrugs, remarks like “you’re just not trying hard enough to feel better” and maybe even hate mail because you’re a ‘faker.’ You can’t sit with the lupus crowd. That seat is taken, sorry. There’s just no room for you. This is exactly how it feels when you’re really sick but the doctors are either too clueless or too overworked to run the gamete of tests that can tell them why you’re so sick.
There is no national awareness day for “Unnamed Illness that I Swear I’m Not Making Up.” You can’t buy a t-shirt that says you’re a warrior battling “Something, I Promise It’s Actually Something.”
People ask what’s wrong with you and when you try telling them they just shrug and say “oh,” or “it’s all in your head, have you tried antidepressants?” (Let’s point out that those people are also downplaying depression, which makes them jerks). The worst part of that is that you start believing these assholes.
You look in the mirror and see someone who is probably just chronically lazy. Maybe your immune system is only failing you because you want to be sick. Who knows, perhaps that emergency room doctor was spot on when he said you just like the attention. Just admit it, you get a bit of a thrill from spending 12 consecutive hours in that hard plastic hospital chair just waiting to be told there’s nothing wrong with you. Oh wait, no. They are just assholes. Don’t believe what they are telling you.
A diagnosis means acceptance, support, awareness, and — most importantly — the right prescriptions and therapies to treat a disease. It can get incredibly messy for people with symptoms indicative of diseases like lupus, multiple sclerosis, rheumatoid arthritis or fibromyalgia. Lots of the symptoms of these diseases mimic other diseases. Pinpointing a diagnoses can turn into a painful trial and error. It can spans anywhere from a few months to a few decades. Sometimes you’ll figure out which disease it is based on an assembly line of needles or scans, and sometimes those tests won’t be able to help at all. On average it can take 6-7 years to be diagnosed with a disease like lupus, but some people still die never knowing the cause of their ailments.
If you’re a woman with symptoms of a disease like lupus, it’s quite common for you to be told by doctors that you are exaggerating, or even making some of the symptoms up. You could even be accused of being drug-seeking or attention-seeking. When you sit there and hear those accusations from an authoritative figure like a doctor, it’s really hard to defend yourself. It’s not easy to remind them that they could be wrong. It takes a lot of guts to tell them that they might need to check for other diseases, they’re probably sexist, and that they keep viewing you as a statistic instead of a living, breathing human being with goals and aspirations.
In many cases, the more you seek help for your symptoms the more stigma becomes attached to your medical records and the harder it can be to get the help you so badly need.
People who are chronically ill but haven’t received a diagnosis deserve the same care and compassion as those of us who were lucky enough to find our ribbon color. We need this awareness to find us a cure. To finally get some answers, we also need awareness to find them a disease.
It is not you.
I won’t sit here and pretend that there isn’t some lingering psychological trauma that builds up inside of you. After spending that many years of your life wondering what you are doing wrong. Wondering even if maybe it actually is all your fault. I felt that emotional pain. Being tossed back and forth between doctors and diagnoses. I had no clue where to turn because I didn’t know what disease I should be googling for support groups. I thought that no one would really understand what I was going through.
When I started trying to articulate what was happening to me I realized that I wasn’t alone. It was hard to find articles and essays written by people like me, people who existed alongside of me in limbo. But, when I stumbled across those special few stories I clung to them and found support. I wasn’t the only one stuck in the in-between. And when I finally met a doctor who gave a damn and took the time to figure out why my immune system was being such a diva I was so relieved that I wanted to give her the biggest high five ever. The fact that you want to high five the doctor who tells you that you have lupus is a sure sign that not knowing is the hardest part of being sick.
We can probably change that though. Not knowing will never be easy, but if we talk about the demons that lurk in that shadowy corner more often I bet we can ease the pain and confusion just a little bit. So let’s do it. Let’s tell our stories before they have a title. We shouldn’t feel like we have to wait for that confirmed diagnosis before we hit the publish button. So what if we don’t know how to tag our posts? We need a narrative for this messy chaos that exists between healthy and diagnosed illness. And we really need to actually listen to people when they feel like it’s the right time to tell us their stories. As a community we have to do a better job of telling sick people that we believe they are sick.
If you’re one of these people stuck in the no man’s land that is undiagnosed illness, please remember that you are not alone and that there is still hope. I spent almost a decade thinking I would never be on the other side of this story, speaking from the perspective of someone with a disease that has a name, yet here I am. Even though your blood work came back negative and there was nothing alarming in your scans that doesn’t mean it’s all in your head. Find another doctor. Demand a different test. Don’t listen to your great aunt who thinks you’re just a hypochondriac.