After months or even years of experiencing symptoms like extreme fatigue, skin rashes, pain, or swelling in the joints, you finally got a diagnosis. It’s lupus.
Because symptoms differ from person to person, can come and go, vary in intensity, and mimic symptoms of various other diseases, lupus can be difficult to diagnose. Lupus is a chronic autoimmune disorder where the immune system’s antibodies mistakenly attack the body’s healthy cells causing widespread inflammation. It can affect your joints, muscles, skin, and internal organs and affects about 1.5 million Americans.
Despite the prevalence and severity of lupus, most people don’t know much about it. The lack of information can make living with lupus frustrating, difficult, and lonely.
We connected with PLM members who have lupus to find out what it’s really like to live with lupus.
Here are 7 things to know about living with lupus:
1.Your life will change
Living with lupus is a difficult task. While you may have been experiencing symptoms for a while, once you receive a diagnosis and begin treatment, that’s when it becomes real. Your entire life will change.
Those “simple pleasures in life”, like making a cup of coffee (or tea) in the morning, going on a walk, stretching, reading a book, creating art, can quickly become not so simple or pleasurable.
In addition, a job change may be required to better accommodate how you feel each day, relationships may be lost and you may need to shift your finances to cover medical bills.
“I feel that just getting up in the morning, having a cup of tea, getting to work is such a large achievement – sod the rest! “ PLM Member
2. Medications can cause problems
A primary way to treat lupus is through various medications, like anti-inflammatories, steroids, and immunosuppressives. Treating lupus can be difficult and can sometimes take months or years to find the right treatment plan.
Because of the variety of symptoms, many people will take multiple types of medication. The problem is that all medicine taken to treat lupus may have serious side effects. Some side effects may be milder like a low-grade fever, nausea, migraines, and change in sleep and bowel habits.
Medication affects everyone differently, so it’s important to be open and honest with your doctor about your side effects and how you’re feeling.
“Finding the right treatment for lupus can be difficult. These medications may help, but can also have very toxic side effects can that be worse than the disease itself. I have right three medications that have caused significant damage to my body.” PLM Member
3. Doctor’s don’t have all the answers
Most illnesses have been widely researched, are easily diagnosed and treatable. While this may be true for acute illnesses, it’s a different story with chronic illnesses. There’s a high degree of uncertainty for lupus, even for doctors.
Lupus symptoms overlap with other illnesses, making it difficult to diagnose. Too few symptoms or symptoms that aren’t severe enough may not warrant proper testing to make an accurate diagnosis. Sometimes lupus is caught late because there were no symptoms at all, though blood tests were slightly abnormal.
There is no specific cause for lupus, adding to the level of difficulty for diagnosis and treatment. Research shows hormones, genetics, and environment can all play a role in the development of lupus. But there are still so many unanswered questions.
“There was (and there still is) so much I didn’t know about lupus. Writing down questions about the pain reminded me to ask my physician and shape the treatment path for my medical team. I also curbed my anxiety and desire for the doctor to just cure me. Medicine is not always medicinal.” PLM Member
“I was diagnosed with SLE (systemic lupus erythematous) 30+ years ago and it’s been quite a journey. Since I joined PLM in 2017, I’ve received lots of help and support I needed from members.” PLM Member
4. Some days you don’t look or feel sick
Lupus is an invisible illness, which means that most symptoms are not visible from the outside.
With lupus, the only visible symptom is a butterfly-shaped rash known as a malar rash. But this rash only occurs in about 40 percent of people diagnosed with lupus.
What makes living with lupus so difficult is that while you may look healthy on the outside, you may be experiencing a lot of pain on the inside, making you feel sad, depressed, and unmotivated.
One symptom that has a severe impact is chronic fatigue. Fatigue can’t be seen, but it can be felt. It’s not just being “tired”, but it feels like everything has been completed drained from you both physically and mentally.
Invisible illnesses like lupus are a double-edged sword. More often than not, people who have lupus don’t always recognize it at first or understand it well enough. This is the main reason why diagnosing lupus can take years.
Because symptoms can vary greatly, there are days you may feel like you can run a marathon and other days you want to curl up in bed under the covers. Using the spoon theory can be a helpful way to communicate to your friends, family and doctors if it’s a marathon or a movie day.
“I freely admit there are days where, just getting out of bed and cleaned up takes away 4-5 spoons. Other days I can end up with some spoons left.” PLM Member
5. You might lose relationships
Lupus has no cure. While there are many ways people with lupus successfully manage the illness and live happy, fulfilling lives, the truth is that it will always be a part of your daily living.
As an invisible illness, it’s hard for others to understand.
You may find you often have to explain yourself to your friends, family, and others around you as to why you feel fatigued and sore, cancel plans, or take a sick day from work.
No matter how much you may educate someone, unless they’re living with chronic illness they can’t understand exactly what you’re going through.
“I did not look sick. When I declined engagements many couldn’t understand and would slowly stop inviting me. I couldn’t keep up with school, work, lupus, and social life. I ended up losing a few friends because of it.” PLM Member
6. You can’t (always) sit in the sun
Photosensitivity is increased sensitivity to sunlight and other sources of ultraviolet (UV) light, that sometimes cause a rash or other skin reaction. Thousands of people, including members at PatientsLikeMe, experience photosensitivity due to lupus.
Exposure to UV light causes damage to everyone’s cellular DNA, but what happens next is what differs. “In people with lupus, the cells are much more sensitive to the damage caused by UV radiation. Once cells are damaged, the immune system clears them up, but people with lupus have a much slower clearance of damaged cells” explained Sabrina Newman, MD.
Dead skin cells that linger around the body trigger an immune system attack. Antibodies typically fight infections, but with lupus, the antibodies target proteins within normal cells and cause an immune reaction.
“The sun seems brighter. The brightness causes migraines for days. More than five minutes and I’m in trouble, the sun exhausts me so bad. I wear F1-41 (rose shaded glasses), they block 80% of blue wavelengths and UV rays which helps with migraines.” PLM Member
7. It affects many systems in the body
Comorbidities, the presence of two or more conditions occurring at the same time, are very common in individuals with autoimmune disorders. In particular, people with lupus are at higher risk for developing comorbidities like cardiovascular disease, stroke, kidney disease, thyroid disorders, cancer, osteoporosis, and menstrual irregularities.
One of the more prevalent comorbidities are thyroid disorders, with about 6% of people with lupus have hypothyroidism (underactive thyroid) and 2% have hyperthyroidism (overactive thyroid).
While the exact cause of comorbidities is unknown, there are several risk factors to look out for including health history, lifestyle, dietary habits, smoking, and medications, like immunosuppressives or chemotherapy drugs.
“Menstruation can cause your body to go bananas with your lupus.” PLM Member
“ I was diagnosed with hypothyroidism soon after my lupus diagnosis and have been on thyroid medication for years. It makes a big difference, but I still have fatigue.” PLM Member
“I have Lupus Nephritis/CKD stage II. I was diagnosed several years ago when a trip to the ER landed me in the hospital with a severe kidney infection and two barely functioning kidneys. I did not know to look for the symptoms. Surely enough before my trip to the ER, I had every symptom.” PLM Member
Get Support You Need
If you have lupus and find it difficult to get the answers you need, find the right treatment program, and need support to live you life with this difficult illness, join the conversation at PatientsLikeMe. At PatientsLikeMe, over 40,000 people share their stories about their journey with lupus and are there to help support you through yours.
“I found out about PatientsLikeMe through a Facebook ad. I clicked on it, fell in love, and have been on it ever since. It’s a community of people who understand you. You don’t have to worry about judgment. It is a safe place for you to express how you are feeling each day without feeling like you’re complaining. Everybody just gets it. Although there are people with different illnesses, you’ll find that we’re all in this fight together – a community of survivors.” PLM Member