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Tips for newly diagnosed lupus patients, Part 1: Taking charge of your medical care
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Christine Miserandino posted:
Being diagnosed with lupus can bring about a flurry of emotions. You may feel upset or nervous about what the new diagnosis means for your future. You may be angry at the idea that your life may change. You may even feel happy that after some time of not feeling well, you finally have a name for what was ailing you. Finally, your condition has a name. Each of these emotions is normal, and no reaction is the right one. In fact, you may feel all of these emotions at some time or another.

But beyond your emotional reactions, you may be wondering what your next steps should be. Below are some tips for moving forward after being diagnosed with lupus.

1. Get a second opinion. Before you begin your journey into chronic health care, you want to make sure you are heading down the right path.
2. Bring a friend or family member to be an advocate for you. You may need to have some tests done and see many doctors in the beginning. Having someone else there to take notes, ask questions, or just be an emotional support is very important. It is normal to forget a question, or not remember important information after a doctor visit. It is also great to have a supportive person with you who can hold your hand, distract you, make you laugh, or just listen.
3. Start a notebook or a folder for your healthcare. Take notes and ask for copies of your test results. Take time to actually read your tests and learn what they mean, or ask your doctors. Keeping a record now is a great start. It's always a much bigger job to back track and get records that you may need in the future. These records and notes can be helpful when you're seeing multiple doctors, dealing with insurance companies, applying for disability, etc.
4. Do your research. After being diagnosed with lupus, you will soon hear all kinds of words that you may not have heard before. Names of medications, secondary diagnoses, and symptoms can be overwhelming and scary. A great way to combat this feeling is to learn as much about lupus as you can and get yourself familiar with the lingo. This will help empower you in conversations with doctors and nurses. When you know what they are talking about you can ask appropriate and necessary questions. WebMD is a great place to start on your quest to educate yourself. There are many articles, posts, and videos on the site that are very informative.
5. Ask questions!!! Do not be afraid to ask questions, even questions you deem silly or unimportant. If you feel any kind of change in your symptoms, tell your doctor. I cannot stress this enough. You are a partner with your doctor in your healthcare. You need to take an active role. You are the only person who knows your body best, so if something feels off, say so.

What would you tell someone who was recently diagnosed with lupus? What would be your top tips?
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lisaisweavebee responded:
Hi and Welcome!

Great advice!

I would probably explain to the newly dx that not every thing they read will happen to them. That each person has a different experience with lupus and that many many people live long lives. It's not the death sentence it once was.

I would also tell them that it is normal to grieve for their past way of living but they need to realize that their past life is just that - "past". The sooner they are able to carve out a new life the happier they will be. The fact is, Lupus changes every thing...from how you work (or if you work) to how you socialize (is there enough energy to socialize?) to relationships with spouses/family (it is hard for them to see you sick all the time) but that it doesn't mean you can't do any of the things you love. You just have to be wise with your energy and time. That is probably the single hardest thing I have had to face with this disease and something that I still struggle with daily.

Lisa
 
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pmacd replied to lisaisweavebee's response:
I would tell them that it is okay to say no.Say no to extra work,say no to anything you know is going to use up spoons.
 
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jabccox responded:
It's o.k to ask people for help, especially when they offer!. I used to take it personally when my mother- in-law would fly in to stay with us and she would immediately start house cleaning or doing laundry. I thought it meant I couldn't keep up or do it good enough. Well, truth is, some days I can't. Now, I welcome her help with open arms and miss her terribly when she's gone.
 
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Christine Miserandino responded:
Thank you everyone for your replies! Everyone has such great tips!

-Christine
 
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Andie_WebMD_Staff replied to jabccox's response:
Hi Jabccox,

That's a great tip for anyone to take to heart! I am one of those people that hates asking for help. And, I probably would have felt the same way that you did when my mother in law came to clean & stuff.

One thing I've learned since becoming a single mom is that asking for help is not a sign of weakness. It's a give and take. Some days there's things I can help others with where they need it, and some days I am on the receiving end.

I believe by allowing friends & family to help us we're allowing other blessings to flow to them. One good deed sown, reaps one in return. So, in a way, we are helping them too.
 
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lupielawyer responded:
Great advice! This WebMD community is lucky to have Christine as a guest expert!!
 
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K2isKsquared replied to lisaisweavebee's response:
Amen Lisaweavebee! The first paragraph of your post should be handed out to every newly dxed patient that is scared outta their minds by Lupus.

You are also spot-on about the grieving. When someone loses a loved one people give them space to grieve -- to be sad, to be angry, to come to terms with their new life.

Being dxed with a chronic illness means the patient has to work through all of those emotions and phases of grief as they say goodbye to who they were, work through the anger of what has happened to them, and hopefully at some point move on to learn how to be who they are now.

K2
 
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laurahlupie responded:
Do not think everything you read online is going to happen to you! Every persons lupus has different smptoms at different stages.
Keeping a positive attitude is what kept me going each day..
Do not feel like you have to "comfort" everyone..That is not your job...I felt like I was constantly saying to people "it's going to be ok...dont worry about me, and I'm fine"
I felt like I was the comforter rather than the comfortee!
Know your limitations! Overdoing it will be your worst enemy!
 
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CharlotteSalyers responded:
Always be positive, An up beat attitude is sometime the only way to get through your day.
 
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Christine Miserandino responded:
All of these sound like great ideas for emotionally dealing with when you are newly diagnosed. What kind of "practical" lupus life tips did you learn along the way?

For example:
I wish I knew it was okay to ask more questions of my doctor. Sometimes I think we all believe that the doctor is the "boss" and we are afraid to be partners in our medical care

I wish I knew that going with the "old lady" huge pill case might not be fashionable, but it sure beats carrying around a pharmacy, or possibly mixing up what I need.

I wish I knew that I should keep copies of my medical records too, and keep notes. You do not know when you might need them, when seeing a new doctor, a 2nd opinion, a disability case, etc.

How would you finish this sentence: "I wish I knew... "
 
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Tori_Lynn replied to Christine Miserandino's response:
I am a 43 year old single woman. I have full custody of my 2 year old granddaughter. I was recently diagnosed with Lupus.It's weird. I feel like the doctors gave me lupus! I went 2 see my Dermatologist because of a strange rash that I've had in the past. Told him about the body aches and asked him 2 test 4 lupus even though when he tested me years ago it was negative. From the moment he did the skin biopsy and sent me 4 my first round of blood work,it was downhill from there! The fatigue. The photo sensitivity. The PAIN! My bones and joints hurt! My muscles are easily fatigued! My legs are the worst! I feel like I went 2 bed and woke up in someone else's body!! I'm not an athletic person,but,I am (was) energetic. It's so hard 4 me 2 be forced 2 sit down(I mean lay down).I have been reading,researching and trying 2 learn about this disease. I have been fighting depression, 4 my granddaughter's sake. But,as I'm sure u all know,it's not easy! It's been hard 4 me 2 explain 2 my family and friends exactly what I'm going through both physically and emotionally. The truth is,I'm already tired of talking about it. Tired of complaining how tired I am. Tired of complaining about the pain.Already tired of needing people 2 help me with the baby when I don't have the strength 2 keep up with her.I'm so angry right now! I can't believe this is happening 2 me! I've never been sick! How did I wake up sick? I do realize that I'm lucky right now that the fatigue and the arthritis are the only things I'm dealing with. I know that there are people who are alot sicker and have been 4 a much longer time than I. I'm just having a difficult time adjusting.I'm hoping that by continuing 2 read and become involved in supportive discussions,that the isolation and loneliness that I'm feeling right now will begin 2 dissapate.Thank u 4 allowing me 2 vent!!!
 
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Christine Miserandino replied to Tori_Lynn's response:
HI Tori (and some of the other fellow moms out there)

I think being a mom is the hardest job that anyone can have in the whole world! But add lupus to that, and we all know it can be difficult. Part of "taking care of my medical care" was prepping for those mommy days when I didn't feel good and being ready for them instead of fearing them or letting them take me down both emotionally and physically.

1. Great tips Jabccox! First rule of being a lupus mom is to stop trying to be super mommy! take help when offered and ask for help when needed.

2. Another thing I do is I try to save quiet/ low energy activities for those days when I am tired. So I save movies, books, puzzles, coloring etc for the days when I have less energy and try to do the higher energy activities or outside activities for when I am feeling better. This way a movie cuddling with mommy is special because she doesnt get it all the time!

3. I have learned that the dollar store is my friend! I lok for easy small craft projects that are cheap and I leave them in my closet. Since they are usually self contained, when my lupus fog is there I dont have to worry about looking for crayons or glue etc. or even thinking up good ideas!

I hope all the lupus moms out there can chime in with their tips and ideas... since I am a new mom too- I would love to hear them. My daughter is 4 and boy is she a bundle of energy!

Until next time,
Love and Spoons,
Christine
 
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anowlin responded:
Such true advice on the journal. Since i didn't have one, I had to spend a LOT of time doing this and it was so time-consuming because I'd forgotten over the years. So, do yourself a favor, be your advocate and you'll be glad you wrote stuff down.

There are so many potential problems that lupies can get; but the chances of getting them all are slim. Still if you've not seen a rheumatologist, you should; and if you've not seen a cardiologist, you should.

Another thing you may experience is the "but you don't look sick" syndrome. Most of lupus's complications can't be seen when you sit in a chair. But then, take a few steps and if there are extreme joint pains they;ll be noticed or a few steps more and you may be short of breath.

But know that you're welcome to come here, we wish we didn't have to meet under these circumstances, but COME and after a while, you'll be able to speak and advise with conviction to others.


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