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Living with Lupus

The Lupus Mindset: Turn Those Can’ts into Cans!

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Even if you don’t feel like it at the time, there is a lot that you can do with lupus. 

People with lupus are under a lot of stress and surrounded by a lot of negativity. There are a lot of things that you were once able to do, that you can’t do. There are a lot of things that you can’t change about the lupus. It’s frustrating and would make anyone upset. Depression and loneliness are something that many people with lupus struggle with and the negative thoughts are difficult to avoid.

However, there is a lot that you can do with lupus. It’s not the end of the world, and it’s not the end of a fun, happy life either. There is a simple trick to positive affirmations: Take the negative thoughts and turn the “can’ts” into “cans.” You might think that positive thinking is a little wishy-washy, but it is surprisingly effective.

Let’s try a few now:

r

You Can Feel Better!

“You can’t cure lupus” is not a lie. Lupus is a chronic disease and has no permanent cure yet. However, the symptoms can go into remission. With treatment, it is possible to live a normal life: Just listen to the stories of other people with lupus!

  • For example, ShanThom72’s story: She had her first symptoms at age 8 and had chronic kidney issues at 15 that led to her diagnosis. It was a difficult road, but once she began taking the appropriate meds, she was able to make it through college, begin a career, marry, and have a healthy baby boy. 
  • Emmitt Henderson III had a hard journey, too. He was hit hard by lupus, and even had to leave work due to brain involvement. But he was able to move on with his life and turned his struggles into motivation. He runs to create organizations that inspire and provide safe spaces for others in their lupus journeys. 

Your quality of life is important, and some days it can feel absolutely miserable.

However, once you hit the right combination of medicine, therapies, and lifestyle changes, your symptoms can improve to a point where you actually do feel good. You can be happy.

Sometimes, these stories can make people with lupus feel insecure, as though they have to live up to these people. But everyone’s journey is different. The point is not “I should be doing this,” but that “this is possible with lupus.” Don’t worry about it – instead, Focus on finding what makes you feel better. Do what you can. Cut yourself slack when you have trouble. The journey may be rough, but stand up for yourself, love yourself, work with a team who cares about you and supports you, and you can regain control over your life! Read more, here.

You can do it!

challenges

You Can Go to School, Work, and Have Fun (With the Right Support)

“You can’t work or go to school” is untrue on multiple levels. With the right medications and treatments, you can be healthy enough to work or go to school (or do more or less whatever you want.) It is also not true that you can’t find employment with lupus – plenty of people with lupus work and, In America, at least, the Americans with Disabilities Act (ADA) protects you. You have the right to ask for reasonable accommodations like breaks, closer parking spots, telecommuting options, special desks, lighting, positioning of office, flexible schedules, reduced or distributed workload, and so on. Reminders and phone apps can be useful, too.  

There’s no shame in getting a little support or taking care of yourself at work. Think of it like this: You want to do your job, and if they give you the support that you need, you can keep doing that job, and even do it better than you are right now because you are more comfortable. 

Dealing with job searching AND lupus can seem overwhelming and scary. With the right information and some practical tips, the process might not be that arduous. School is also possible. 

The key here is that people with lupus have limits, and it’s important to learn them and accept them, but once you know your limits, then you know how to handle them when you’re up for it and communicate your needs better.

It can be hard and frustrating to ask for help, but it’s a part of taking care of yourself. It’s a strength, not a weakness.

You can do it!

psychosis

You Can Do Many Activities with Your Friends!

“You can’t hang out with friends” is only true if they aren’t willing to compromise or be flexible, and that’s on them. Yes, maintaining friendships with chronic illnesses is hard. Everyday activities can be draining, and even thinking about a concert, or a bar, or even an online gaming session can be exhausting because of fatigue. However, there are many things that one can do with other people that are less taxing. It’s different person-by-person, and one person’s easy activity may be someone else’s Everest. And your friend does have to make several accommodations for you, but that’s what friends do for each other.

Talk with your friends about these few interesting options:

Online gaming: Quiet games might be best, but some people with lupus might find action games with friends to be cathartic and stress relieving or enjoy tabletop games. Bringing it online gives you more flexibility in when and where you can be while gaming, and, if you need to stop, you can bow out. 

Walking around the neighborhood: Walking is a low-impact exercise, and it can be fun to do with friends. An added bonus is that they get a walk in, too!

Playing Board or Card Games: Board games are mentally engaging, fun, and social without being physically demanding. For some people with lupus this might be too much, but for others it might be ideal. 

Art Therapy: Making pictures with one’s friends is fun and helps relieve stress. Other creative pursuits can enrich both of your lives and help both of you greatly.

Regular Calling Sessions: Having a regular call to talk to someone is a great way to bring back some structure. They can be as long as you want, about whatever you want, and are great – especially if your friends aren’t local.

Letter Writing: The advantage of letters to other fun social activities is that no one expects a fast turnaround, but everyone appreciates getting a gem amidst the bills and ads. For lupus warriors with hand pain, letter writing can work with physical therapy to help regain mobility in a fun way.

And many more! You can do it!

depression

You Can Handle the Stress!

And you do it everyday like a champ. 

The stress of lupus and life may seem overwhelming, but you can do this. The key is taking care of yourself and making yourself a priority.  Be aware of diet, exercise, and learn to pace yourself. Don’t force it, though. It’s okay to be tired. Slow down. Do something relaxing. Meditation, such as mindfulness, is a great outlet for stress. Someone who listens to your troubles can do you a world of good. 

Listen to yourself. Go easy on yourself. You are trying! Sometimes, all that you can do is to get through the day. Focus on keeping up the basics and build up to more, find what you need to do to get through the day.

You can do it!

Comments (4)

4 thoughts on “The Lupus Mindset: Turn Those Can’ts into Cans!

  1. I’ve had lupus over 30 years.. I had kidney failure, depression. But with help I managed to have a career, now retired and raise my children and now enjoy my grandchildren. With a positive mindset. I joined the lupus group and found long life friends to share my feelings with those years. The days not feeling well… remember just take a day off to rest.. often forget that. Stay Positive each Day

    1. I’ve had Lupus since I was 25. I’m now 74 and worse than ever. My Rheumatologist has me on 3 Cellcept a day, but wants me to take 4 a day. I refuse because all that medication does is make my red blood counts very low and I’m so weak I can hardly get out of bed. Maybe some people can function well on their meds and have a normal life. but it not in the case for me.

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