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Jessica’s Coping with Lupus Corner

Strategies for Speaking with Your Lupus Doctor

Jessica Rowshandel, M.S.W.
Jessica, Rowshandel, M.S.W.
Director of Social Services
S.L.E. Lupus Foundation

Dear Jessica,

I tell the doctors how I feel and they look at me like I am lying, and it’s so depressing. I need to find a doctor who knows about lupus.

-APL

Dear Jessica,

I am under a doctor’s care, but some times I don't think he understands what I'm trying to say about what is happening with me.

-AMW


Getting to “Got It!” with Your Doc

Open communication is critical, especially with diseases like lupus that can change spontaneously and give you unexpected (and often unwelcome) surprises.

If you feel that your doctor doesn’t believe you or doesn’t understand you, there’s a communication roadblock.

Finding the Two-Way Street

In a perfect world, the relationship between you would be a partnership in which you felt that all of your questions were answered in clear and easy-to-understand language, and all of your medical needs met with patience and empathy.

The reality is that the communication channels between doctors and patients are sometimes not even remotely picturesque.

There are many reasons why—including how things are communicated.

Use “I” Statements

It’s important for you to become your own advocate in an attempt to improve the flow of communication As Sefra Kobrin Pitzele says in her book, We Are Not Alone: Learning to Live with Chronic Illness, “Your job is to do everything in your power to help your doctor help you.”

Be assertive, yet diplomatic. Let the doctor know that you understand how busy she must be, and include the ways that you appreciate her. That said, continue to explain the needs that you still have.

For example, “Doc, I know you really care about my health and want the best for me, but sometimes when I come in here and tell you what’s going on with me, I don’t feel that you believe me or really try to imagine what I’m going through. I end up feeling worse.”

Or maybe, “Doc, I know you have a million patients you’re trying to take care of at once, but I need to let you know about these new symptoms…and I need to feel that you are taking in what I am saying.”

The use of “I” statements such as these comes across very differently than “you” statements such as “You don’t understand me and I can’t take it!”

“I” statements, in contrast, avoid putting the other person on the defensive and placing blame—but still send a message loud and clear.

Take It Another Step

To learn more on communicating assertively yet diplomatically, check out the University of Buffalo’s tip sheet “The Language of Assertiveness.”

Another resources is the the University of San Francisco Medical Center’s practical and comprehensive guide called “Communicating with Your Doctor,” which includes some of my personal favorites: keeping a diary of new symptoms and keeping a list of questions you think of between visits.

Time To Fire Your Doctor?

From my experience, doctors are not purposely trying to upset you. Between hectic schedules, time constraints, and the intermingling of a wide variety of personality traits, someone is bound to make someone else unhappy, even if unintentionally.

Often doctors appreciate knowing if there is something that you are unhappy with so that they can be careful not to repeat the same behavior, which is why it’s vital for you to open up about your feelings. The doctor will likely respond positively and communication will begin flowing again.

I wouldn’t suggest firing your doctor unless you have made valid attempts at expressing your concerns. If she dismisses them or takes offense to what you are saying, well, maybe it’s time to consider finding someone who can better meet your needs.

Sometimes relationships don’t work out and it’s time to break up.

Practice, Practice, Practice

Being assertive and diplomatic can be easier said than done. It takes practice and, at first, can be scary. 

Don’t be shy. Practice what you would like to say with a friend, or write it down in a journal. Work through the fear and eventually you will get the hang of it. It’s worth it in the end if it means that your relationship with your doctor grows into the partnership you need it to be.


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Disclaimer: This website and its contents are designed for educational purposes only. Jessica Rowshandel, MSW is the S.L.E. Lupus Foundation’s Director of Social Services. She is not a physician. The advice provided is for educational and informational purposes and the Foundation does not recommend or endorse any particular treatment or therapy. The information provided here should not be used for the purposes of diagnosing or treating a medical or psychiatric illness. It is not intended to be a substitute for professional care. Lupus is a very individualized illness; consult a healthcare professional before making any decisions about your care. If you have or suspect you may have a health problem, you should consult your health care provider. Telephone calls, emails, and online content do not constitute counseling services in any way. The S.L.E. Lupus Foundation does not provide any medical or psychological services to its patients and users. For an accurate medical or mental health evaluation, participants should seek an evaluation from a qualified healthcare professional. S.L.E. Lupus Foundation employees, consultants, and agents shall not be liable for any claims or damages, and expressly disclaim all liability of any nature for any action or non-action taken as a result of the information generated by the S.L.E. Lupus Foundation programs and its website, as well as the S.L.E. Lupus Foundation Facebook and Twitter pages.

Comments

 @Anonymous: I'm sure the

 @Anonymous: I'm sure the Lupus Alliance of America's Long Island chapter will be happy to help you.  Here is their website: http://www.lupusliqueens.org/

 

Warmly,

Jessica Rowshandel, MSW

 

lupus?

I am in my early 20s and have lupus like symptoms. I'm being treated by a rheumatologist, but although I have many lupus symptoms, because my ana test is negative my rheumatologist wont make a official diagnosis. I'm looking for a lupus specialist on long island. Does anyone know of one???

 HI - I can definitely help

 HI - I can definitely help you with both. Please call me at the S.L.E. Lupus Foundation -  212-685-4118, ext 32.

Warmly,

Jessica Rowshandel, MSW

Doctor

I needed a doctor that Specialize in Lupus. My daughter had a Rhemutologist and she left the hospital. We received no notification and right now she is in a crisis. My daughter does have insurance HIP/Medicaid, we live in Queens. I feel that a doctor that specialize in Lupus would be good for her.

I am also trying to find her a therapist she feels that she needs help. I have a hard time getting her to do anything lately. She just lost her job two days ago. Because, she had just started the job two months ago. And then she started having this crisis. Please HELP...

Fibromyalgia

Rebecca,
I have a family member who struggles with Lupus AND Pancreatitis. When her Pancreatitis flairs up it causes major issues for her. I have struggled with fibromyalgia for years and have been tested for Lupus b/c of the family history. There are a lot of online resources. Have you ever used LifeScript? I was recently told that yoga could help me manage my pain so I have gone a few times and it does seem to help. Good luck to you! Be your own advocate!

Recurrent Pancreatitis and Lupus

Hi Rebecca,

I am also an enigma apparently. I have experienced recurrent pancreatis, but I just found out what it was yesterday. In my case, I discovered the cause of my persistant (almost 3 years) symptoms only when my digestive system had shut down (gastroparesis). I do not know much about it since this is a fairly recent? manifestation of my lupus. This last bout landed me in the hospital for a few days with significant inflammation in every abdominal organ. The hospital doctors finally confessed that I have a "very complex case indeed". Now they want to study me. I am rather confused at this point because this is the same hospital where I have been going for emergency treatment on almost 20 occasions and they treated my symptoms as not worthy of further study, or "not real". This all change two weeks ago when they accidentally found a tumor (which has been successfully ruled out as a cyst, hemangioma, or adenoma but otherwise unidentifiable) on my liver. They are calling it a "right hepatic lobe abnormality". They are hesistating to call it cancer, but won't do a biopsy because of the risk of spreading any potential cancer along the needle pathway. At this point, I feel like the subject of a very bad joke. It is not easily forgivable. And for the fifth time, my rheumatologist saved my life. But the problem is that the ED docs are so haughty they never call him until something goes horribly wrong.

I wanted to give you a little background into my story. My question is: how exactly has pancreatitis effected you? Are your symptoms exactly the same every time? Diagnosis-wise, this is all very new to me. I don't have any comparison for the symptoms I have been having these last few years. Any information is greatly appreciated as my life depends on me knowing what I am dealing with here.

recurrnent pancreatitis and lupus

Has anyone had problems with recurrent pancreatittis and lupus. But no cause for the pancreatitis? Just wondering since I've been a mystery.

Dear Basia,   Thank you for

Dear Basia,

Thank you for sharing such a wonderful story! I am so happy to hear that you are doing this well!

Warmly,
Jessica

Dear Mickey, This is

Dear Mickey,

This is definitely a decision that requires a lot of consideration. I would love to help you. Can you call me @ 212-685-4118, ext 32?

Best,
Jessica

Dear Jessica, I have been

Dear Jessica,
I have been diagnosed with Discoid Lupus at 12 then it progressed to full blown SLE. I had it all skin rashes fatigue anemia antibodies joint pains weakness misunderstanding from doctors friends and family. but the worst was still before me. In 2002 my kidneys started to fail and 2006 I started dialysis. I was in hospital almost every few weeks with anemia needing blood transfusions, blood infections, jumps in blood preassure to 200/140, diagestive problems (vomiting, diahrrea, bleeding stomach ulcers), pleuritis and even seizures after which I had been unconscious for few days at a time and once could not recognized my husband or close friend. Now I am very well since I have received A KIDNEY TRANSPLANT . Total STRANGER offered to give me her kidney. When I asked her why she would go under a knife for me she answered "Greater love has no one then this that someone lay down his life foe his friends. Those were the words of Jesus Christ before he went on the cross to die for the sins of the world. He did it for me and I can give you my kidney"
You wrote about relaxation and meditation and no meditation works better for anybody than meditation on the Living Word Of God - Jesus Christ.That is what worked for me-taking Him as my personal Lord and Savior.
As for my lupus-since the kidney transplant it is better too
I am daily taking probiotics to prevent from stomach upset (immunosupressants are really not good for digestion) and spirulina for blood building properties and I am eating healthy as you write. But most of all I have peace about my lupus because I am now child of God I am in His protection and care.
Basia

Questionable Docter

My sister and my very close friend thinks I need to see a speicalist due to my lupus diagnosis I have had my physcian for almost 30 years he is a gp and diagnoised my mctd with lupus and arthiritis on my second visit which was my yearly at the second visit I feel so blessed that I have a doctor so knowledegable. I have previously been diagnoised with fibromyalgia and migraines the headaches I have had for about 15 years and fb about 5 years. My doctor knows me so well and at this time my report for my vital organs are all clear . I have now started taking plaquenil. I have good days and bad days. I feel any day we're here is a good day I see my physcian and eye doctor every 6 months. Should I see a specilaist or is it ok to stay with my physican I feel comfortable with him. I know my sister and my friend are just concerned for me and my health. I excercise and try to eat healthy but would it better for me to see a specialist even though I'm comfortable with my physcian.