Being diagnosed with lupus was a bewildering experience for me. Suddenly, everything made sense – the joint pain, the rashes, the fatigue, the swelling… the endless appearance of new and strange symptoms. Yet, at the same time, nothing seemed to make sense. No one in my family had an autoimmune disease; I’d barely even heard the word lupus spoken before.
It’s been eight enlightening months since I was diagnosed with lupus, and I feel like I’m just starting to get a grip of this horrid disease. There have been lots of surprises so far on my lupus journey as I’ve tried new things, educated myself, and spent time with other lupus warriors. In this post I’m sharing 10 things I didn’t realize would happen after I was diagnosed with lupus (although there are certainly more than just 10). This list includes the most surprising changes and the ones that have been particularly difficult for me to accept.
10 Things I Didn’t Realize Would Happen After I Was Diagnosed with Lupus.
1| I didn’t realize that I would start to hate sunscreen.
I’ve always been the person who carried extra sunscreen for a day at the beach and made sure everyone applied it properly. I liked being sun safe when it was only occasionally necessary. But sun protection is a daily activity ever since I developed lupus photosensitivity (which means that sun exposure can make me very sick). I have to apply sunscreen every time I step outside my home into sunny weather – even for a quick trip to the store. Not only do I strongly dislike constantly smelling like sunscreen, but I hate that I have to immediately bathe and wash my sunscreen coated clothes and skin after I return home so that I don’t smear the stuff on my bed, couch, chairs, etc.
An alternative to around-the-clock sunscreen use is to cover up my body with SPF clothing. I’m slowly adding long sleeve tops, full-length leggings, and wide-brim sunhats to my wardrobe in the hope that I can greatly reduce my sunscreen use.
2| I didn’t realize that my anxiety would simultaneously improve and worsen.
I’ve struggled with anxiety and agoraphobia for my entire life, and I never would have thought that being diagnosed with lupus would actually help in that struggle. It turns out that one of the few upsides of fatigue is that I’m too tired to be anxious. My highest anxiety levels have historically occurred when I need to leave my home to do something – my mind would race and my fear would skyrocket as the time for me to leave approached. Now, my anxiety gets pushed aside because I have too much to focus on as I prepare to leave, such as packing my meds, applying sunscreen, and carefully conserving my energy. My lupus requires so much effort that there’s not much time and energy left for my anxiety to take hold.
On the other hand, I have a lot more to worry about now that I’m chronically ill. I worry about side effects from medications, sun exposure, health insurance, life threatening flares, and so much more. My generalized anxiety tends to be worse, especially when new symptoms show up. A lot of my everyday anxiety is centered about my pain. For example, I’m afraid my pain will get worse, I’m anxious because I’m in pain, I’m nervous I’ll run out of pain medication, or I’m worried an activity will increase my pain. Severe chronic pain is a scary, nerve-wracking ordeal.
3| I didn’t realize it would be such a private battle.
That may seem like a strange statement, especially if you are a regular reader, because I have been so open about my health struggles on this blog. I’ve tried to be very vocal about my disease ever since I was diagnosed with lupus, but often I found that people simply weren’t interested in discussing it. This was rather startling to me, because people asked plenty of questions when I was attending school and when I was working full-time. Ninety percent of my life was about lupus when I was at my sickest, but only 10 percent of my conversations touched on it. My struggles suddenly felt very private and isolating.
4| I didn’t realize that I would be dependent on things I cannot get on my own.
I often find myself at the mercy of a doctor to provide me with a prescription. Because my body and immune system don’t work the way that they should, I need prescription medications for acute illnesses more frequently compared to a healthy person. Furthermore, I take six prescription medications from three different doctors every day. I’ve nearly run out of these essential meds because my rheumatologist wasn’t returning phone calls or because the pharmacy took a week to restock something I needed. I had an especially difficult time when my husband recently changed jobs and we had a lapse in health insurance coverage. This forced dependence on doctors and prescriptions has been a really difficult adjustment for me. It makes me feel like a child that has to keep asking for permission for something they do all the time.
5| I didn’t realize I wouldn’t necessarily receive good medical treatment.
Before I became chronically ill, I thought that doctors pretty much had all the answers. I would make an appointment for a specific problem and my doctor would always take care of me. This is why I was so shocked when, during my search for answers about my declining health, my various doctors told me there wasn’t anything they could do about my symptoms. They told me that my anxiety and extra weight were the only reasons I was in pain. I felt incredibly let down by the medical community.
After I was diagnosed with lupus, I was angry that my previous doctors had overlooked so many indicators of the disease. Why hadn’t they taken me seriously? Weren’t they supposed to help me? I realized I had to take responsibility for my health into my own hands. I read scientific articles, attended support groups, and asked tons of questions about my disease. I learned so many things that I needed to know about lupus that doctors hadn’t told me. It hurt me that I suffered for so long because some doctors did less than the bare minimum when I thought they were dedicated to helping me.
6| I didn’t realize that I wouldn’t be able to take care of myself.
I don’t like to say that I am disabled, because I can still do most functional things like walk and bathe. Unfortunately, the truth is that I am severely restricted physically and mentally. I can do a lot of things for myself, but I can’t come close to doing everything that is required for me to live. This became crystal clear to me recently when my husband took a week long business trip. While he was gone I went to all my doctors’ appointments and only met my most basic needs, yet the physical effort of attempting to take care of myself made me very sick.
The combination of my joint and muscle pain, lupus brain fog, and the rapid depletion of my energy during any physical activity means that I will always need help. The only likely exception would be if my lupus went into total remission.
7| I didn’t realize that brain fog would be so constant.
Lupus brain fog started out as an occasional annoyance but it became severe over the past few months. I regularly experience brain fog, or cognitive impairments, that hinders my concentration and memory to the extent that I can’t work, drive, or express myself. I spend a lot of time being confused because I can’t think clearly. Sometimes I have to ask my husband something five times before I get it right. The weight of trying to function with brain fog can be so heavy that I would rather retreat into silence. It leaves me feeling uneasy, as if I’ve left behind something essential but I haven’t the slightest clue what it could be. It’s worse during flares, when I’m tired, and when I have to take a lot of pain medicine.
8| I didn’t realize I would spend so much of my life being sick.
I thought that getting a diagnosis would solve most of my problems. The doctors would know what was wrong with me, I would receive treatment, and I would improve… right? That hasn’t been the case so far. Sure, I’ve received lots of treatment and I have improved a little, but I am still grievously sick on a regular basis. Where is this remission that people keep talking about?
I planned to emerge from my illness into a bright new world where I could return to work, travel more, and feel the freedom to achieve things again. Instead, most days I’m balancing in between a state of “I’m so sick I can’t leave my apartment” and “I’m not quite as sick but I don’t feel great and I’m still really limited in what I can do”.
9| I didn’t realize I would contemplate death so often.
The fatality of lupus is not discussed enough, in my opinion. When I was first diagnosed was lupus, I was reassured by the oft-repeated statistic, “80-90% of people with lupus can expect to live a normal life span.” A few months later I realized that lupus can be very deadly and, even if it’s not, can lead to a much diminished quality of life. In fact, before before modern treatments were developed, only 50% of people with lupus lived for five years past diagnosis. I feel especially overwhelmed by the fatality of lupus when I search the lupus hashtags on Instagram (something I try not to do often) because they are full of stories from people who have lost loved ones from lupus.
I am constantly being monitored and keeping watch for signs of lupus nephritis (a condition where lupus affects the kidneys), which is one of the most common causes of lupus related deaths. I’m concerned about the fact that lupus can attack literally any part of the body – even the bones, spinal cord, or blood vessels – because there is no way that my doctors can monitor every part of my body for potential damage. I’m also afraid of developing cancer, organ failure, a deadly infection, or other serious side effects from my medications.
10| I didn’t realize how much this disease would make me appreciate life.
That is, when I’m not too confused, too sick, or too tired to appreciate it. The threat of a shortened life span is certainly a powerful motivator to enjoy each good day I have. Being diagnosed with lupus made my life very difficult, but it also served to clarify my life and ultimately make it more purposeful and rewarding.
If you have been diagnosed with lupus, or another chronic illness, what are some things that have surprised you about your disease?
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