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Which advice would you give to someone who has just been diagnosed with Lupus?

See some advice from people with experience in Lupus to people who have just been diagnosed with Lupus

Lupus advice

Advice for Someone Diagnosed with Lupus



Receiving a diagnosis of lupus can be overwhelming and bring about a range of emotions. It is important to remember that you are not alone in this journey. With the right support, knowledge, and self-care, you can effectively manage your condition and lead a fulfilling life. Here are some essential pieces of advice to help you navigate life with lupus:



1. Educate Yourself:



Take the time to learn about lupus and its various aspects. Understanding the condition will empower you to make informed decisions about your health and treatment options. Consult reputable sources such as medical professionals, support groups, and reliable websites to gather accurate information.



2. Build a Support Network:



Reach out to your loved ones, friends, and family members for support. Having a strong support network can make a significant difference in managing lupus. Share your feelings, concerns, and experiences with them. Additionally, consider joining local or online support groups where you can connect with others who are going through similar challenges.



3. Communicate with Your Healthcare Team:



Establish open and honest communication with your healthcare team, including your primary care physician and specialists. Regularly update them on your symptoms, concerns, and any changes in your condition. This will help them tailor your treatment plan to meet your specific needs.



4. Follow Your Treatment Plan:



Adhere to the treatment plan prescribed by your healthcare team. This may include medications, lifestyle modifications, and regular check-ups. Consistency is key in managing lupus effectively. If you have any concerns or experience side effects, discuss them with your healthcare provider rather than making changes on your own.



5. Prioritize Self-Care:



Make self-care a priority in your life. This includes getting enough rest, eating a balanced diet, and engaging in regular physical activity suitable for your condition. Avoid overexertion and listen to your body's signals. Managing stress is also crucial, so explore relaxation techniques such as meditation, deep breathing exercises, or engaging in hobbies you enjoy.



6. Protect Yourself from the Sun:



People with lupus are often sensitive to sunlight, which can trigger flare-ups. Protect your skin by wearing sunscreen with a high SPF, using protective clothing, and seeking shade when the sun is at its peak. This precaution can help minimize the risk of skin rashes and other sun-related symptoms.



7. Pace Yourself:



Recognize your limitations and pace yourself accordingly. Lupus is a chronic condition, and pushing yourself too hard can lead to increased fatigue and potential flare-ups. Learn to prioritize tasks, delegate when possible, and practice self-compassion. Remember, it's okay to ask for help when needed.



8. Stay Positive:



Maintaining a positive mindset can greatly impact your overall well-being. While living with lupus may present challenges, focusing on the aspects of life that bring you joy and gratitude can help you navigate through difficult times. Surround yourself with positivity, engage in activities you love, and seek professional help if you find yourself struggling with your mental health.



9. Be Mindful of Your Emotional Health:



Living with a chronic illness can take a toll on your emotional well-being. It is important to acknowledge and address your emotions. Seek support from mental health professionals, join support groups, or confide in trusted friends or family members. Taking care of your emotional health is just as important as managing the physical aspects of lupus.



10. Stay Informed:



Keep up-to-date with the latest research and advancements in lupus treatment. New treatments and therapies are constantly being developed, and staying informed can help you make well-informed decisions about your healthcare. Attend conferences, read reputable publications, and consult with your healthcare team to stay abreast of the latest developments.



Remember, everyone's experience with lupus is unique, and what works for one person may not work for another. It is essential to work closely with your healthcare team to develop a personalized approach to managing your condition. With proper care, support, and self-advocacy, you can lead a fulfilling life despite lupus.


Diseasemaps
17 answers
I would advise to work closely with your medical team, carefully exploring medications & their side effects. I think physical therapy in the form of mild exercise and massage therapy should become a core part of your health care. I kept trying to pretend I wasn't suffering for many years and it caused me some serious problems later on as I struggled to come to grips with my disease. Perhaps taking some extension education on chronic pain earlier in my life would have avoided this.

Posted Sep 1, 2017 by Ailsa 2000
Don’t panic! You can still live a great life! There’s a lot of truth in once you’re diagnosed, you’ve experienced your worst flare! You and your Dr’s can work together now!

Posted Oct 27, 2017 by Heather 1600
Stay positive. Keep fighting. Educate yourself and others around you as much as possible. Do your research and be prepared to ask your doctor questions (write them down before each visit). Join a group or find others who can share you experience and feelings with. Enjoy life. Be aware that you are not the same person you were before you were diagnosed.

Posted Jan 29, 2018 by Kimcita 2600
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that fight always that you take your time to analyze your life and prioritize what's really important and good in life and in your life

Posted Feb 19, 2017 by Stella 1000
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I would like that the doctors told me to explain more about the disease. my family help me in the process of rebuilding our life and accompany us in our treatment

Posted Feb 22, 2017 by Mambo 1101
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Ask your doctor any questions you have. Do not believe everything that we read on the internet. Educate ourselves and follow always the drugs as it is. Not to take anything not authorized by the doctor. Always use sun protection: sunscreen, hat, umbrella, clothes, sleeves, etc

Posted Mar 8, 2017 by Verónica 1000
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Enjoy each day and live to the full, and if you feel tired q rest. To avoid the stress

Posted May 10, 2017 by Suyai 1000
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Calm ta, breathes, can cry today, maybe a few days more vc and strong and will overcome this, I know it sounds like a oscuridão without a higher purpose, to believe tuso will get well, believe that you deserve to live and you will fight it till the end so if you get discouraged think of someone worth fighting for

Posted Jun 7, 2017 by Nataly 1000
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First I would say you are not crazy you see your body if something happened, but you are not alone I am like you and I'll support you always.

Posted Aug 31, 2017 by Prado 2000
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don't despair looking at the internet, look for groups that have the same disease to seek guidance,

search on the internet that would not have done

Posted Aug 31, 2017 by lissette 2222
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That you take it easy, not be harassed and that with time, peace of mind and understanding of the family takes it well

Posted Aug 31, 2017 by Rosa Maria 2000
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THE MAIN THING IS HABERIGUAR ,SEARCH FOR INFORMATION, COMBERSAR WITH YOUR DOCTOR TO CLEAR YOUR DOUBTS, LOOK FOR APOLLO OF THE FAMILY IS THE MAIN SUPPORT THAT WE HAVE...
HAVING LUPUS DOES NOT MEAN THAT YOU ARE GOING TO DIE NOW AND THAT WHAT YOU HAVE DOES NOT MAKE YOU LESS YOU HAVE TO THINK POSITIVE AND LOOK FORWARD, LIFE IS HARD, AND FOLLOWS THE MORE ONE SHOULD LOOK AND AVANSAR WITHOUT FEARS

Posted Sep 2, 2017 by patricia santander galaz 1100
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Don't give up (to) you to move ahead life is beautiful and still with due care, all we can do without excessive!

Posted Oct 3, 2017 by FABIOLA 2010
Translated from portuguese Improve translation
When I was diagnosed with Lupus, I got in despair cuz I didn't knew the disease, had never heard of before, and had never known someone with this problem. I was very ill, and he thought that he was going to die, or that he was going to live forever as a sick, full of limitations. I've spent all money I had with doctors, expensive medications, therapies, trying to find a savior to my problem (I am indebted to hj because of this).

If you had just be diagnosed today, the first, would read enough on the subject ( blind ignorance, causes fear and insecurity), parallel to this, would a meditation to calm me down, put the head in place, write a diary, do not rush out to a lot of doctors, trust in the doctor that I had diagnosed or change the logo if you don't trust, change my diet radically ( it took me too long to figure out how much the foods were making me ill, mainly sugar and industrialized). Avoid the sun, but not to enter in a paranoia crazy ( this made me very ill tb., the feeling that I was stuck, without being able to go on the street).

If you're medicated, treating injuries, and feeding properly, wait and trust, will improve, and will pass, the best advice is...try to live the best you can, the best food (healthy of course), the best companies, the best sleep, delete everything that is bad for you and you will see how much you will improve and go back to having a life many times better than the one before of Lupus (this is my case).
Make a work of self-knowledge is paramount! Think about the vc, and what makes you well, in all senses of your life ( physical, emotional, and spiritual) is very worthwhile! Lupus has given me a great discovery of myself!

Posted Oct 20, 2017 by Cristiane de Lucena 1000
Translated from spanish Improve translation
Be happy! There is No better medicine for the soul that sonreirte from the heart.
Acéptate and love you as you are.
It is not the end, it is the start of a new life, a life in which everything moves in waves: sometimes high, sometimes low, sometimes still.
The challenge is every day: Every day discovers in the mirror that wonderful being you are.
Don't neglect and don't let the Lupus you are finished with your dreams, on the contrary, persíguelos hard. Channel your pain and/or frustration to actually do what you thought impossible!
You're the king, the queen of your world! You are GREAT, POWERFUL! YOU ARE THE BEST!!!!!

Posted Oct 22, 2017 by Denis 800
Translated from spanish Improve translation
Remember that you and your lupus, even though yours is similar to another, no two cases are the same. Before your doubt, always talk with your doctor, do not listen to the treatments miracle, if you knew a cure for lupus, the world would be telling, so don't you lower your guard, be smart and learn how to tame your wolf.

Posted Oct 24, 2017 by Pilita 2190

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