What I Wasn't Told When I Was First Diagnosis With Lupus


When you have lupus, it’s like living with a 3 year old wearing roller skates on an ice skating rink in July. Nothing against 3 year olds on roller skates, but they can be a little bit unpredictable, just like lupus. This article aims to tell you my side of the lupus story. I have a funny, morbid sense of humor and I try and think of my situation as a dark comedy. It’s funny, it’s sad and maybe a little offensive.

What is lupus?

Lupus is my body’s immune system getting confused and thinking that my own cells need to be eliminated. When I explained lupus to my kids, I told them that we all have superheroes (our immune system) in our bodies that fight off the villains (infection, disease, viruses). My superheroes are confused and they think that the civilians in the city (my body) are the bad guys so they attack them. The pills that I take put my superheroes to sleep so that they stop attacking the civilians.

Basically, my body is attacking itself 24 hours a day, seven days a week. I get no break. It will never stop. I take a lot of medication to make it better but it never goes away. In my case, my immune system is attacking my kidneys and my pancreas. But it can affect any part of the body including skin and hair.

My lupus started rearing its ugly head when I got pregnant with my second son in 2010. Diagnosing Lupus is like trying to put a bikini on a greasy pig – it’s challenging, complicated and a formidable force to be up against. It took us until 2014 to get a final diagnosis. In my situation, the pig I was trying to get the bikini on was stuck in a small space and didn’t have any place to hide. Others with lupus, though, are wrestling pigs in giant arenas so it’s much harder to get a grip.

When I received the final diagnosis, it wasn’t a shock. I didn’t cry. I didn’t have any questions for the doctor. I was happy. I was relieved. It was a huge weight off my shoulders. It was a new beginning. In my eyes, it was a new door opening with new treatment possibilities. I felt hopeful that maybe I could be well again. But after the diagnosis settled in there are some things I realized no one told me about living with lupus.

Some of those things are funny and awkward, and some of those things are scary and sad.

1. You will become well acquainted (nay, friends) with the nurses in your doctor’s office. And when I say friends, I mean like on social media and stuff. I have several nurses from my doctor’s office on my Facebook friend list. I had an unexpected and long hospital stay a year ago and I’m even friends with the nursing aid that helped take care of me while I was there. And let me tell you that can be pretty darn embarrassing if I think about it too long, cause that chick changed my bed sheets after some unexpected accidents and had to come get a sample of my bowel movement for a culture. Forming a relationship with the people who are helping keep you alive though is never a bad idea.

2. There is a doctor for absolutely every single tiny remotely inconsequential issue you might have with your body. Lupus patients are diagnosed and maintained by a rheumatologist, but if you have daily diarrhea, nausea or vomiting, you have to see a gastroenterologist. If you develop diabetes you have to see an endocrinologist. If you have lupus nephritis or issues with your kidneys, like I do, then you have to see a nephrologist. If you have skin problems or rashes from lupus, then you have to see a dermatologist. Currently, I see one of each of those – including my family physician.

3. You will develop a superpower that is of no use to anyone. You will become capable of swallowing a palm full of pills the size of a hamster in one gulp.

4. Taking a shower will become akin to participating in an iron man marathon and you will never win. With lupus comes an extreme unexplainable fatigue. I’m talking about an-up-all-night-party-like-it’s-1999-two-bottles-of-tequila-during-the-iron-man-marathon-after-cleaning-a-teenager’s-bedroom kind of pure exhaustion. I make light of it, but it’s a hard thing to accept when you are a 37 year old mother of two young boys and you can’t even get out of bed to get them cereal. And what exactly brings on the fatigue? It can be anything and nothing. Too much sun, cleaning the bathroom, driving for too long, attending a fair or going to an amusement park – forget about it. There are some things that I have to plan way ahead of time. I usually coordinate with my husband so that after the event he can take over parental duties so that I can recover. We always know what’s going to take me down and we try and plan for it.

5. Normal, restful, blissful sleep will become a distant memory. There are so many reasons why you won’t ever sleep normally again. Pain, peeing every two hours, inflamed sinus passages causing breathing issues, dry mouth, bad dreams, anxiety, and medications are just a few. I have to take a sleep aid every single night or I won’t fall asleep, no matter how exhausted I am.

6. Working a normal job may be much more difficult than you think. I worked at a large credit union for close to 15 years before my illness forced me to quit. I found it difficult to go back to work since I was in and out of the hospital and seemed to always be coming down with illnesses. I also retain quite a bit of fluid in my legs and sitting and standing for long periods of time can be extremely painful. Additionally, the exhaustion and fatigue is quite literally debilitating. A normal work day for a healthy person can be a nightmare for lupus patients.

7. Guilt. I live with it. A lot of it. I think that this comes with not just lupus but with any chronic illness. And let’s talk about this subject for a minute. The guilt is unwarranted. Unnecessary. It’s not like I asked for this illness. I didn’t order it on Amazon and have it delivered next day air. It just happened. It’s not my fault I’m sick but that doesn’t mean I don’t feel guilty for what it has done to my family.

I come from a hard working family. I was raised on a small pig farm on 13 acres off of the Appalachian Trail in Central Pennsylvania. I hauled firewood, shoveled coal and fed pigs until I moved out into my own apartment. I was raised to be a hard worker, so when I choose to take a nap instead of fold my laundry, there is guilt involved. To say that my illness has had a deep impact on my family’s financial stability is an understatement. I’m not sick enough for disability, but I’m just sick enough that daily working life is incredibly difficult.

The last five years I’ve found myself hustling to keep us together and to help fend off the guilt. The guilt is overpowering – overwhelmingly suffocating. I feel guilty that my kids don’t have the life they should have. I feel guilty that we depend on my hard-working parents and in-laws so much. I feel guilty that my husband works so hard to come home to a sick wife and just more and more bills. It helps my conscience to take my medicine, go to my doctors’ appointments and eat well. This way I know I’m doing my part to keep myself as healthy as possible and anything beyond that is out of my control.

8. You will have side effects from medication, which will take time to get used to. Insomnia, rashes, random moments where you poop yourself, thinning hair, growing hair where there shouldn’t be hair, headaches, joint pain, mornings where you vomit your breakfast, drowsiness. The list goes on and on as an endless cycle. If you don’t take the medications you get sick. If you take the medications you get sick. Some of the medications they will prescribe you they also give to cancer patients and people with malaria. It’s not as scary as it sounds. I currently take 19 pills a day and there isn’t a single one I can skip. You will learn what helps the side effects and what makes it worse. Nausea and diarrhea is what I struggle with on a daily basis so I avoid heavy meals, greasy foods and beef. I love greasy foods and I love beef, but it’s what I have to do if I want to leave my bathroom.

9. Speaking of side effects, you might get things like shingles. I’m just saying. It could happen.

10. You’re going to forget everything …. all the time. Some of this comes from anxiety that is associated with having lupus, but it’s also just part of the illness itself. This sometimes annoys my husband, but he pretends to understand, which is kind of him.

11. People will think you are a flake. Lupus is invisible. That means that you look fine. You don’t look sick. You will cancel dinner dates with your friends because you’re too tired or your depressed that day. You will dodge public parties because you don’t have an immune system at the moment and you would like to avoid a cold this week. You will not participate in your children’s school events because it’s to exhausting to get out of bed that day.

Lupus easily reveals the real friends and the loyal family members in your life. I’m truly among the blessed because I’m surrounded by the most loving and amazing family and friends. I’ll give you a piece of advice. You do you to the best of your ability and the family and friends who really give a crap will understand. I couldn’t care less what people think of me. I’m a good person and I live my life like that. If someone cares for me enough, they’ll get it.

12. You will become a very good liar. You know that social etiquette question people always ask when you first run into them, “Hi. How are you?” You’ll find yourself just saying, “I’m doing OK. How are you?” I would say that 80 percent of the time that’s going to be a lie. You aren’t doing OK that day, but there is no point in going over your list of aches and pains. Just lie.

13. Lupus isn’t cheap. Between doctor’s visits, medication, blood tests and ER trips, it’ll break you if you don’t have good health insurance.

14. You could die. When I was diagnosed I didn’t immediately feel my mortality. Five years after my diagnosis, I spent some time in the hospital with pancreatitis. Leading up to this I was having a difficult time affording my medications, so I stopped taking them. All of them. My triglycerides are heavily affected by my lupus, which went dangerously high, causing my pancreas to become enflamed. I’m also diabetic which just made the situation even worse. I spent eight days with several IVs in my arm and tons of medication and monitoring to make sure I was getting well. It was a wakeup call for me. I could have died. Don’t take your mortality for granted. We only have one life to live. Remember. This is a serious illness so take care of yourself. If you can’t afford your medications, don’t be shy to talk to your doctor about it. I’ve learned there are alternatives and that your doctors can help.

Lupus is only one part of you. It doesn’t define who you are. You define who you are. You define how you live your life. Don’t let your illness run your life. You decide what’s important to you. Set your goals in life and stick with it. Don’t live your life for the illness. A lot of bad things will happen to you after Lupus but a lot of amazing things will happen also. Live your life for the amazing!

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