Being diagnosed with a new disease can be incredibly scary. Dozens of questions run through your head, but you might not be ready to ask them because you are still processing how your life could be very different from now on. Talking to other patients, though, can give you much-needed answers and advice, especially when it comes to a chronic condition like lupus.
So, we asked people with lupus what new patients should know after their diagnosis, and there are four major pieces of wisdom they had to share:
1. Meet your new normal: the cycle of flares and remission.
According to the Lupus Foundation of America, lupus is a chronic, autoimmune disease that can affect any part of the body. It impairs your body’s immune system so it’s less effective at fighting off foreign invaders like viruses, bacteria, and germs. On top of that, it disrupts the body’s ability to tell the difference between these invaders and its own healthy tissue. Essentially, the body attacks itself and causes severe pain. You can either Read this blog or look at what other people have to say about their lupus experiences.
According to many lupus patients, the pain that accompanies the disease causes major lifestyle changes.
“I have been going through this process over 22 years. It has caused me to stop working as a special education teacher because I’m constantly tired and in some kind of pain.” – Alita
“I can’t do the majority of the things I used to do.” -Denitra
“I can’t be in the sun because I get a butterfly rash on my face and become extremely tired. My beach days are over.” -Jackie
By definition, chronic illnesses last longer than six months. Lupus symptoms often recur (go away and come back) for years. This is difficult because you might never know when a flare is on the way.
Flares can be triggered or exacerbated by a wide variety of things: sunlight exposure, temperature changes, rain, or sometimes seemingly nothing at all. Flare ups often begin with no warning and can happen at any time. They can cause exhaustion, weight loss, fever, and several other symptoms. A simple cold front can turn an okay day, into one full of severe and unpredictable pain.
2. Symptoms vary from person to person and may be invisible
No two lupus patients are the same. Some people prefer warm weather and some prefer cold. Some like to handle the pain by staying in bed all day, while others find being active is more helpful. It all depends on how the body reacts. But, as we’ve said numerous times already, everyone is unique and will have their own ways of dealing with the pain.
“There are many things that help me get through bad days, as not two bad days are identical. One day, it might be binge watching a TV show, another day it might be sleeping or other small acts of self-care.”- Alyssa
“I like cooler weather better. Warmer weather, or really hot summers, make me feel sick and fatigued. Colder weather might bring stiffness, but nothing as bad as what the heat brings.” -Judy
“I have poor circulation and my extremities get extremely cold. I try to keep warm and wear layers. Sometimes there is nothing I can do to stay warm.” -Kristin Marie
Another aspect of lupus that makes battling the disease even harder is the fact that it is an invisible illness. If you looked at two people, one who has lupus and one who doesn’t, you probably wouldn’t be able to identify the person with the disease. The symptoms are debilitating, but they don’t always appear on the outside.
“Lupus is an invisible virus. It makes me feel different things at different times.” – Kourtney
“I am reluctant to talk to people or make friends for the fear of being judged. I have chronic pain that interferes with my mood.”- Anonymous
“I avoid people, because I can’t make plans. I always cancel them.”- Jackie
“I’m not the same person I was before I was diagnosed.”- Judy
This may cause relationship problems with people who don’t understand, but it can also result in building a stronger support system among those who do. So how do you find people who “get it?” A good place to start is with other patients, especially those who have learned how to stay positive in spite of the struggle.
[tweet_box design=”default”]4 things that are important to know about your lupus diagnosis #LupusChat[/tweet_box]
3. You have to find your own way to deal with flares.
We all have our own ways to handle adversity. Some people yell, some go for a run, and some watch their favorite movies. Responding to a flares is no different: each person is unique and there are a wide range of ways to deal with the pain.
“My puppies get me through the bad days, and so do my granddaughters.”- Jackie
“Sometimes a good cup of coffee and chocolate can really brighten my day.” – Kristin Marie
“Journaling to let out my emotions, while letting tears stream. Not holding it in. [I’m] able to look back after, when things are okay again, and reflect.” -Jessica
“Listening to music. Hot showers, hot packs, writing things down and talking with others who understand.”- Anonymous
“Sleep!”- Jeannine
“Mine is Dr. Pepper. I know it’s not good for you, but you have to have something.”-Jackie
4. It’s ok to feel sad, discouraged, and even defeated.
Positive thinking isn’t all it’s cracked up to be. In fact, psychologists say striving for “accurate” thoughts may be more helpful in the long run. Contrary to popular belief, having a negative attitude on bad days might be exactly what you need. However, if you want help to feel more positive and empowered, reaching out to others is a great way to cope as well.
“Try to seek support from someone that’s positive. Ignore any negativity. Join a lupus page on Facebook or a support group in your area if you have one. Keep ALL of your doctor’s appointments. Take ALL of your medication.” -Alita
“Yes, lupus hurts and has affected me greatly, but it has also blessed me. I saw my true friends, and I learned life is not about material things. I learned to appreciate the little things in life, especially my friends and family. I am grateful to wake up every morning, even if it’s waking up to pain. It has shown me strength that I never knew I had. It taught me that I am important.” -Marlo
“Please stay strong. You are not fighting alone. We are family because we struggle with some of the same symptoms. WE CAN DO THIS!” -Denitra
There are LOTS of lupus resources out there:
- If you’re on Twitter, follow or join #LupusChat. It’s a monthly chat held every Sunday at 3PM EST.
- You can also follow tags like #Lupus and #Rheum on Twitter and Instagram to learn more about the experiences of others.
- Participate in lupus awareness campaigns like #LHandSign or #GetYourPurpleOn.
- Donate to lupus research organizations.
- Participate in a lupus walk in your area.
- Share your own experiences by becoming a part of Health Stories Project.
Lupus is hard. Lupus sucks. But with the right support system, pain management, and outlook, it doesn’t have to define who you are.
