I have lupus. 8 things I wish people understood about my disease…

I’m standing in the kitchen, doubled over, using the back of a dining chair for support. There’s a stabbing pain in my lower abdomen that feels like hot iron rods. The pain is so intense that I momentarily forget about the fresh 2-inch incision across my throat.

 

I have lupus, an autoimmune disease that causes my body to mistake its own cells and proteins for invaders (like viruses). Then it attacks them with the same vigor as a healthy immune system attacking an infection.

An early lupus diagnosis is treated with antimalarial pills. For reasons still mysterious to the medical community, they can keep lupus from progressing into a life-threatening illness. But for a small number of lupus patients, the pills cause extreme intestinal pain — especially if taken without food. I’m one of those unlucky few. I take the pills anyway.

 

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Lupus is comorbid with many other ailments, including thyroid nodules, which can become cancerous. In most cases, surgically removing the nodules eventually becomes necessary. Thus the incision: Earlier in the week, I’d had half my thyroid gland taken out.

My surgery caused swelling, and for a while I couldn’t eat solid food. I had to face the antimalarial pills with nothing cushioning my stomach but some cottage cheese. I spent weeks doubled over in excruciating pain.

I’m 27 years old, and I’m facing a lifetime of sickness. Even now, more than a year after my lupus diagnosis, I have trouble believing this is my life.

Even as the inner turmoil that comes with a lifelong diagnosis subsides, I still struggle to coherently explain to friends, family, and co-workers what lupus is, and why, although you can’t see it just by looking at me, it can be truly disabling.

Here are eight things I wish people understood about my illness.

 

1) I’m basically allergic to myself

Lupus causes your immune system to react to your own cells the way some bodies react to an allergen. Almost all allergies are caused by immune system confusion and overreaction — peanuts are not actually a life-threatening invader — but in most cases, the trigger can be avoided. You can decline shellfish. Your doctor can give you an alternative to penicillin. But you can’t limit contact with your own body.

With an autoimmune disease, the body produces an inflammatory defense response to itself, much the same way that a person with dermal sensitivities might break out in hives if she touches alfalfa hay. Usually this manifests as flu-like symptoms — the sign of the body fighting off a threat. But for a lupus patient, this response is always happening. My body believes it is fighting an infection all day, every day. I feel permanently rundown. The aches and pains most people associates with colds and the flu are just part of ordinary life for me.

2) A “good day” is a day I can function at all

The last time I actually felt good was about a decade ago. I remember where I was and what I was doing: I was onstage, rehearsing for my final fall play of high school. I had the lead. I felt great. But by the time we were performing our final show, I was so sick I should have been in the hospital. In fact, my liver and spleen were so inflamed that doing the show could have ruptured either of them, killing me.

 

I had contracted severe mononucleosis, the hallmark fatigue of which I mistook for exhaustion brought on by college applications, rehearsals, and a full class load complete with APs. It got so severe that I ended up missing many weeks of school my senior year. I had to drop out of the spring musical. I had to pretty much drop out of life as I knew it.

I never got better.

One year out from the initial case of mono, during my freshman year of college, I was convinced I was having a relapse.

Three years out, I thought I was just not as good at coping with stress as everyone else.

Five years out, I had finished my undergraduate degree and was working on my master’s. I knew I was really ill, but the best my doctor could do for me was prescribe me medication to cope with the debilitating exhaustion.

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I became known as “the girl with caffeine and Advil” at school.

I joked about my coffee addiction, but it wasn’t funny. That first year of grad school, I moved back home with my parents and commuted three evenings a week. I always brought my thermos of green tea, chai, or coffee with me so I could stay awake till 10 pm, when our class ended, and then drive 25 miles home without dozing off.

One rushed night, I left home without my thermos. I was already two-thirds of the way to school when I realized it wasn’t in the cup holder. I sobbed on the freeway.

I got a text from my dad offering to drive to school to deliver my caffeine to me (I was an adult at this point). He told me that even he wanted to cry on my behalf.

When I hit seven years of being sick, still without a diagnosis, I became distraught. I knew I wasn’t getting better — but I still didn’t know if I was going to get worse or just stay this way forever.

I spent nearly a decade navigating the world through a shroud of extreme exhaustion, muscle pain, brain fog, headaches, a sore throat that never went away, muscle spasms that would regularly send forks flying across the table at dinner, and a constant low-grade fever. Why? Because no doctor could properly diagnose me, although I was told by more than one medical professional that I needed a “psych evaluation.”

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What saddens me is that all it took was a two-hour medical history discussion with a rheumatologist and three large blood panels to confirm my lupus diagnosis. It wasn’t necessary for me to go undiagnosed for so long. And my doctors certainly didn’t need to make me feel like I was crazy.

Because I managed to finish my undergraduate degree on time and then graduate with honors as an MA student (while working a job throughout all of it), people didn’t take my illness seriously until it had a name. They couldn’t fathom that a sick person could be so “successful” on paper.

But what was I supposed to do? Not function?

Everything I’ve done, I’ve done despite being sick. And I know that I would have done a hell of a lot more if I’d been healthy. I am keenly aware of all the things I didn’t do, and won’t do, because my body won’t let me.

3) Just because we’re working doesn’t mean we’re okay

Since my diagnosis, my “new normal” (as I affectionately call it) tops out at 80 percent of my pre-lupus normal.

Sadly, that’s a reality for many young men and women who have autoimmune diseases.  They get advanced degrees, work full-time jobs at the office, and even manage to work on personal projects on the side.

Our functionality is not always a legitimate measure of how we feel. We are often in pain and exhausted most of the workday. When you ask us to go above and beyond, we are pushing ourselves harder than we should. Sometimes this lands us in the ER or in urgent care.

Why, you may wonder, don’t we just tell people we can’t do what’s requested of us?

Regardless of how kind and understanding our co-workers are, we work harder than we physically should because if we’ve lucked into a job that has decent insurance benefits, we need to hold on to it. We need to see the specialists we need to see and get the medications we need to take to function in a world where we have to depend on ourselves for survival. Rent has to get paid, sick or not.

Until then, your friend with lupus or multiple sclerosis or Crohn’s disease is going to keep showing up to work, keep having to cancel plans, and keep hoping for a cure.

And if you understand what that person is dealing with every day, and still choose to show up in her life, then you can count yourself as a truly good friend.

4) The medication can be just as bad as the disease

Most people my age are deciding between engagement rings and cars to lease. To be properly medicated for my illness, I had to choose between permanent stomach pain (with potential retinal destruction) and long-term organ damage, leading to death.

I chose the former.

I should consider myself lucky. Out of the hundreds of autoimmune diseases known to medical science, very few are understood, and even fewer have received substantial treatment research. Lupus is one of the most common autoimmune disorders and in recent years has gotten enough attention to come with a handful of proven drug treatments. Sixty years ago, lupus meant an early, unpleasant death. Today, with treatment, 80 to 90 percent of people with lupus have a normal life expectancy.

But the side effects of the medication can still be devastating.

Every week, I have to check my vision with a grid to make sure my retina isn’t being destroyedThe antimalarial-induced gastritis I developed while recovering from thyroid surgery is one of the less serious side effects my medication can cause. In the long term, it can also lead to blindness. Every week, I have to check my vision with a grid to make sure my retina isn’t being destroyed.

Right now, I’m facing a lifetime on this drug. The rate of serious eye damage starts to dramatically increase at five years of continued use. But if I stop it, it means that the lupus could progress and cause permanent organ or nerve damage. That damage can only be controlled with steroids — which, in turn, can cause damage to the heart.

 

5) Treatment can radically damage your looks (and your self-esteem)

When I was first diagnosed, I was having muscle spasms every day. I was losing feeling in my hands, and I was terrified that it was just going to get worse until I was unable to walk or move.

My new doctor started me on a medication that had a reputation for causing weight gain. Despite my vanity (and I’m quite vain, I’m not going to lie), I figured I could handle 15 pounds in exchange for not being in constant pain.

But it wasn’t 15 pounds. It was 50, all put on it less than a year. I’m only 5-foot-4, and while I’m curvy, this was unprecedented.

The night I realized how much my body had changed, I totally lost it. It still gives me a lump in my throat.

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It was Halloween. I knew I’d gained weight, although I didn’t know how much. I decided that stepping on the scale was a bad idea, especially because my pain was, for the first time in in a long time, almost completely gone.

I went as a hippie. I wore a pretty off-white tunic dress with a crochet trim, a flower wreath, and had my mid-back-length wavy hair cascading down. I left the house feeling beautiful.

But one Instagram photo later, I saw what I looked like. I had ballooned up so much that it was as if I were staring at a funhouse mirror version of myself. For the next seven months, I dodged cameras and begged people not to post photos of me, feeling panicked every time they did, and sending frantic and (in hindsight) embarrassing emails pleading for them to crop me out of the picture.

One truly good friend wrote back, “I thought you looked beautiful, but I’ll remove it right now.” It was one of the nicest things someone did for me throughout this ordeal.

On top of the psychological distress I was dealing with, the weight gain was financially devastating. None of my clothes fit: pants, shirts, underwear, pajamas, dresses —nothing.

I needed to buy an entirely new work-appropriate wardrobe, which was unaffordable, despite not having to wear fancy business attire. Luckily, my friends and family helped out with the cost of some new clothing as well as collecting hand-me-downs for me. Despite the assistance, it was still difficult to stretch the money needed to replace everything in my closet. I’m still trying to fill out my wardrobe with basics while selling my too-small clothes online for pocket change.

I eventually switched to a new medication, one that worked better for my particular symptoms. While some of the weight has dropped off, and I finally have enough energy to work out a little more, it’s still an uphill battle.

My new meds cause me to lose hair, retain water, especially in my hands, and have breakouts more often.

Medications can cause drastic changes in physical appearance. Try not to be judgmental — I guarantee the person whose weight, hair, and skin have changed is being plenty hard on herself as it is.

6) I have to cancel plans — a lot

I’m sorry. I know I seem flaky. Please don’t take it personally.

There are days where I am so worn out from the shower I just took to get ready to go out that I need to cancel my plans. I’m often too exhausted and too sore to even contemplate sitting upright, let alone driving into the city to hang out at a crowded bar. Sometimes the act of eating dinner will be so tiring that halfway through, I have to lie down for 20 minutes.

The most common scenario goes like this: I’ll manage to go out on Friday or Saturday night. I’ll make plans to get brunch or go to a cookout at a friend’s house the next day. The next day arrives, and I have a throbbing headache (which I refer to as “everyone else’s hangover,” because I don’t really drink), and then, instead of socializing, I end up napping most of the day and trying to do a couple of small household chores. It’s depressing, and I’m always afraid someone will think I’m just unreliable.

The truth is I’m lonely. I miss my friends, and canceling plans because I feel sick is always emotionally difficult for me.

Once in a while I’ll be feeling pretty damn good for four or five months at a time. I can rally enough to go out on weekends — and even some weekdays! But inevitably I’ll start to feel sick again. Sometimes all I need is a weekend to rest. Other times, I end up basically non-functional for six months.

I call these periods “lost months.” I don’t know when a bad streak is coming, and sometimes I feel like it will never end.

7) I’m not going to get better

I had (emphasis on had) a very well-meaning friend who would regularly check in on me. I appreciated her concern. But every single time I had a good day, she would say, “See? You’re totally getting better!” I appreciated her optimism, but it became frustrating after a while. Yes, I still have pretty good days, and sometimes even stretches of good weeks. But they always end. I’m not being dramatic —those are the medical facts. My friend’s incessant baseless positivity felt after a while like somebody telling their buddy with an amputated arm, See, it looks like it’s growing back.

I spent a lot of time trying to be patient with my friend. But the longer it went on, the clearer it became that she was never going to actually hear me. She would make plans to do things I couldn’t possibly do anymore, and when I reminded her of my condition she’d say, “But it’s a couple months away, you’ll be able to by then.”

There is no cure for lupus. As far as medical science is concerned, chances are pretty high that I will always have lupus. I might go into remission. I might not get substantially worse. But I am never getting “better.”

I know I am sick. Of all the people who are bummed out by my ill health, I guarantee I am the unhappiest with the current state of my body.

I am also the most up to date with current treatment options, clinical trials, lifestyle changes that might help, and general understanding of my disease.

When you insist over and over again that I will get better, you’re indirectly telling me that I’m either lying to you about my prognosis or that I’m too stupid to understand my disease and treatment options. Worst of all, you are intimating that I’m not trying hard enough to get better.

If you aren’t my doctor or a researcher specializing in autoimmune disease, then please — I appreciate support, but not baseless, grating optimism.

 

8) Lupus means I may never be a mother

Last week, musician Selena Gomez had to have “the talk” with America. She admitted —as though illness is something that needs to be admitted, like a crime — that she not only has lupus, but had been through a course of chemotherapy for it, a not-uncommon treatment option.

Finally, a young woman with a public platform was disclosing that she had an autoimmune disease. My first thought upon hearing the news was, “How brave!'” which was quickly replaced with, “Brave? How sad that she has to admit this as if it were some hideous sin.”

I’ve always been bothered by the idea of having to apologize for being sick, but people can be judgmental about it — and when it comes to the people closest to you in your life, especially romantic partners, you want to know sooner than later if they’ll still be around when you’re at your worst.

He said a woman’s inability to have her own children was a relationship killerWhen I start to date someone seriously, I have a conversation that the chronic illness community calls “disclosure.” It’s terrifying every time. Imagine yourself at the beginning of a new relationship — not the very start, but the first turning point, the bit where you imagine for the first time that this might become serious. You like this person a lot. You don’t completely know them yet, but you’d like to. You hope they feel the same. You two have momentum, and you want to see where it takes you.

Now imagine, at that moment, telling your new partner that you’re broken — quite possibly forever.

Even if they accept the news, the conversation isn’t over: Now you also have to comfort them. It’s an odd role reversal, because, as the sick one, you expect that people will want to comfort you. In my experience, it’s been very much the opposite.

You have to coach them through the reality of your disease.

It isn’t just that you’re ill, or that you’ll never have as much energy as most people, or that you’re not contagious, no matter how much it seems like you have the flu — it’s that, oh, by the way, having children might kill me.

Technically, women with lupus can get pregnant, have a healthy pregnancy, and give birth to a healthy child. But about one-third of women with lupus end up in pretty dire shape post-pregnancy. Extreme organ damage and early death are among the more alarming complications.

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Lupus is affected by hormonal fluctuations, so a pregnancy could cause my body to go into a flare-up — leaving me in extreme pain and unable to effectively take care of my child, my partner, or myself.

I refuse to take that risk. Thirty percent is not a number I’m willing to mess with. Not only would it be unfair to my child and partner, it would be unfair to me. I can’t enjoy motherhood (or life) if I’m bedridden. As much as I want to go through a pregnancy (and seeing all my friends have their own children is definitely a lesson in envy), choosing to do so while ignoring the risks is not a path I plan to follow.

That refusal can be a huge problem. Years ago, I was in love with a man who badly wanted a family. I was worried. When he clarified that he only wanted “natural” kids — those made from his and his partner’s own genetic material — I was angry and heartbroken. He said a woman’s inability to have her own children was a relationship killer. When he said he absolutely didn’t want to adopt or even use a surrogate, that was that.

In retrospect, perhaps I should have appreciated his honesty. He now has an adorable child with a woman who seems lovely and sweet, and I’m in a wonderful four-year relationship with a man who is astoundingly full of love, patience, and support. If we have kids, we’ll have them in a way that doesn’t put me (or my ability to raise them) at risk.

One last parting thought: While the laundry list of problems that are inherent to having an autoimmune disease might seem overwhelming, like anything in life, you eventually get better at coping. And the thing we need more than anything else from our family and friends is that you’re understanding of our condition, and not resentful when the most adventurous thing we can do on a Friday night is hang out on the couch and chat.