About Lupus

Jessica’s Coping with Lupus Corner

"How Can I Get Help? I Feel Trapped."

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

Dear Jessica,

How can I get help in my area? I have no help or support from my doctor anymore. I just hate where I am in my life and how things are working out in my own body. I feel trapped.

-TW


Dear TW,

People who come to see me here at the Foundation have made it very clear that living with lupus takes a lot of work, both emotionally and physically, and going it at alone makes it more difficult. If you, or anyone else out there, would like to speak with me about finding support in your specific area, please feel free to email or call me.

Of course the unfortunate reality is that in some parts of the country, and the world, there is little to no support for people with lupus. Counselors and support groups can be hard to come by, which is why we have created this advice column and have a page on Facebook – to reach out to as many people across the globe as possible. Many other online support communities are out there as well.

Some people even go to local support groups that aren’t specifically for lupus, but for an illness with similar symptoms, like arthritis or kidney disease.

Finding Your “New Normal”

I also hear that you are experiencing grief about the life that you want and the life that you actually have. You quite appropriately use strong language, like hate and trapped. It is important to know that strong feelings are normal, and expected to come up—and even come and go—during the grieving process.

Once you are diagnosed with lupus, your life changes, forever. You have to find your new normal. This is a really hard reality to accept and it’s a process (a journey) to get to the point of finding and accepting that new normal.

In the grieving process, people experience a loss of something or someone very important to them. With lupus, you might feel like you have lost many things, including your sense of who you are and who you wanted to be.

Many people have told me that they feel that they lost:

  • their health and sense of well-being
  • the ability to be able to generally predict how their body will behave
  • the ability to achieve certain goals, maintain hobbies or passions, and even keep certain relationships.

Having lupus has a very deep impact that is not to be ignored. It takes a lot of emotional work to get through the grieving process, and having support along the way is really important.

To learn more about the process of grieving, I encourage you to read the wonderful article “Coping with Grief and Loss” on Helpguide.org.

Learning about grief and talking things through with others (receiving support) won’t make the lupus go away, but it will help you get through the bad days.

Do you have tips for TW? Tell us about them in the comments section below.


Update: We are no longer accepting comments on our site, but please share your thoughts on our Facebook page.

Ask Jessica!

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

Orlando meeting

I just found a meeting in Orlando. Google: living well with lupus Orlando. The next meetup is Saturday, September 8 at 11am in the Garden room of Dr. Phillips Hospital. Hope this helps.

I live in Orlando. You can

I live in Orlando. You can reach me at leanrodrig@aol.com

i need help .i have sle lupus

Hello my name is julie soria I am a 37 year. Old hispanic female .a mother of 3 daughter 21-17 ..I. found out I had sle lupus in 2005. My life has become a mess.I am having so many problem with getting in to the doctors. I need . I have brain fog that seem. To be all the time . I worried if something don't change I may never find. Myself . I just want to go back to work live life nothing big . I find my self wanting to lock myself in my room and just cry my eyes out and not see anybody . People well never understand. How I feel. How I hurt all this time . And its only getting worse . I know I feel it . I need help I feel so alone in m life. Alone in bakersfield c..a

 @Anonymous If you need any

 @Anonymous

If you need any assistance, please don't hesitate to reach out to me at the S.L.E. Lupus Foundation for more information on groups in your area or to discuss being newly diagnosed. My phone number is 1-800-74-LUPUS/212-685-4118, ext 32.

 

Warmly,

Jessica

Hi

Hello Melissa
I was just diagnosed with systemic Lupus also and I live in Orlando. Did you find a support group?

 Dear Susan, I am so sorry

 Dear Susan,

I am so sorry that you are going through all of this and no one is listening to you. Six years is a very long time to be ignored and having medical issues. I would take photos of anything that you can -- like the butterfly rash and hair loss over time. And also keep good records of all of your symptoms if you have not already. For example - days that you feel certain symptoms, including how much sleep you had the night before, what your activities were and what you ate. Documenting these symptoms, and any accompanying trends that you might notice (if you haven't already) could be helpful when going to the doctor so that you have something concrete to show them. I think the best thing to do at this point is to connect with your local lupus chapter and ask them to refer you to a good lupus doctor. Rheumatologists are experts in different types of rheumatological diseases, and lupus is not every one's speciality. You want to find one whose speciality is lupus. This seems to be your local chapter: http://www.lupusuk.org.uk/  . If you would like to talk further or if I can be of any further assistance, please email me at jrowshandel@lupusny.org

lupus

please help i cannot get anyone too listen to me i live in the uk..i have had several raised skin rashes for about 10 years or more i have a butterfle like rash on my face allthough sometimes its not there is more visable when i get hot or sweat or in sunlight...i cant lay down for more then 2 hours or my body.cramps ..and gets very stiff.and becomes very painfull im always tired exhuasted.even after sleeping..my b12 levels are low and injections are not making a differance...i had a dvt 4 years ago with a swollen heart muscle..and fluid on the lungs ..i often have protien along with blood in my urine... gst constent ulcers both mouth and nasel..my hair is falling out as are my teeth..they just crumble..my gp tells me it is my age..some days i wished i had not woke up as movement is painfull..im 57 and for the last 6 years have felt like 90...ive been tested for artheritis and rhumatism and been cleared of that...

Dee, I also struggle with

Dee,
I also struggle with anger due to my illness. Some of my family and friends don't understand that I am really ill even though I look fine. But as you know, I don't feel "fine". I would highly suggest finding a local support group of others who are struggling. I have connected with some ladies at my church who are either struggling with a lupus diagnosis or haven't been diagnosed but are struggling with the symptoms of fibromyalgia . Both are pretty terrible to live with as you know. Do find someone to talk to. It doesn't have to be a counselor but could be. I have found that finding people who relate to my situation is what makes me feel the best.

 Dear Anonymous -   It sounds

 Dear Anonymous -

 

It sounds like you are going through quite a lot. Can we talk via telephone? My phone number is 1-800-74-LUPUS(58787).

 

Warmly,

Jessica

lupus

hi for several years i have been suffering with swollen hands and flu type aches and pains ..my urine is tested and shows blood and protein..im exhausted when i have done a task of cleaning making beds ect..i have mouth ulcers and my hair as started to thin-an.. i have had positive blood test the last 4 that was taken showed antibodies.im allergic to septrin,and i have suffered with depression now for years.im feeling very tired now at any task that is to be done.im gaining weight due to non exercise..i also had a tia in may 2009 ..and still get the chest pains on breathing...i have yet not been diagnosed as having lupus but im on lupus medication can someone please advise me were to go next im getting very for fogetfull at times.. while writing this im suffering with a kidney infection this is my 6 th infection this year..but as im getting each infection they are getting worse..im now suffering hearing loss were i have to wear 2 aids someone please advise me were to go next..

@Dee - I think it's a great

@Dee - I think it's a great idea for you to come to a support group. I think you will find that you are not alone in the feelings that you have been experiencing, especially with the way people have been responding to you. I , personally, run the groups in Manhattan and Staten Island and other members of our staff run the Brooklyn and Bronx groups. Please email me at jrowshandel@lupusny.org so we can speak further and I can get a copy of our group schedule to you. Thank you for reaching out.

P.S. - You also might find the following story valuable. It's called the Spoon Theory and it's a great way of explaining certain components of lupus to others: http://www.butyoudontlooksick.com/category/the-spoon-theory/

@Anonymous - thank you for

@Anonymous - thank you for sharing. It sounds like things have been difficult. There is an agency is Manitoba that provides services for the lupus community. Here is their contact information (below). Should you need further assistance please contact me at jrowshandel@lupusny.org.

LUPUS SOCIETY OF MANITOBA
204-942-6825
lupusmanitoba.com

Hey i constantly have anger

Hey i constantly have anger and agression to things that upset me or someone that makes me feel like a failure or not "truly ill" because i look like im in perfect health....what can i do to help the matter and are there any support groups or psycological help in nyc?
Thank you for your time.

I was diagnosed with

I was diagnosed with Raynaud's at 12, then with Lupus at 16. I am only 21 and have had mad lupus flares, that have sent me to the hospital. No one around me understands what lupus really is and what it can do to a person. Not only that, they don't want to take the time to learn more about it. I don't have anyone to talk to about what I'm going through. Any support groups in Winnipeg, Manitoba, Canada? If not, online chat support groups?

Hi Melissa, Thank you for

Hi Melissa,

Thank you for responding to the advice column. I am sorry to hear about the challenges that you have been having. There are three chapters in Florida. I have provided information for all three so you can choose the office closest to you. Perhaps, through one of these offices, you can find a local support group and also obtain a referral for a doctor you feel comfortable with. The Lupus Support Network is based out of Pensacola, but serves several citis: http://thelupussupportnetwork.org/ , 800.458.8211. The LFA of Southeast Florida is located in Delray Beach, but also serves multiple cities: http://lupusfl.org/ , 561.279.8606. Lastly there is the Lupus Foundation of Florida - http://hstrial-lupusfoundati.intuitwebsites.com/ , (727) 447-7075.

You can also call me at 1-800-74-LUPUS (58787) or email me at jrowshandel@lupusny.org.

I need help finding a support group in Orlando,Fl

Hello, I am newly diagnosed in January of this year with systemic Lupus, I have since moved to Orlando,Fl. I am Having trouble finding a good doctor, and a support group. I am still learning how to deal with the disease and the Fog. I currently work at Sea World and the stress is affecting me. I am tired, and the depression is setting in. It would help to be able to talk to other people that understand what I am going through. Any suggestions would be helpful.

Thank you,
melissa

Dear Nancy, I would love to

Dear Nancy,

I would love to talk with you. Since you in the NYC-area, I can be of direct assistance. Please call me at your convenience at 212-685-4118, ext 32 or email jrowshandel@lupusny.org.

Thank you for reaching out on behalf of your family.

Hi Carrie, I'm very sorry to

Hi Carrie,

I'm very sorry to hear about your flares. There is a Lupus Foundation of Northern California. You can contact by phone 408-954-8600 and their website is http://www.lfnc.org/

Best wishes.

My brother and his wife

Dear Jessica,

My sister-In-Law has had lupus for many years, within the last few years she had a huge set back. She now has extensive heart and lung dammage which has made her totally dependent on my brother. She requires continuous oxygen and her quality of life is poor.
My brother works full time and then comes home to take care of his wife. I don't know how much longer he can go on caring for her. He is physically exhausted and emotionally drained. He is not well himself he has Charcot - Marie - Tooth disease which is a form of Muscular Dystrophy. I don't know how to help them but they desperately need help, even someone to clean the house would be helpful. Is there any service availabe to help in this kind of situation. They live in Queens NY.

Please help, Nancy

Lupus

Hello I was just diagnosis with dicoid lupus a couple of month ago. I would like to know if you have support groups in Berkeley, Oakland SF bay area in california. I been attack about three time within the last 3 months with flare ups. It so bad that the pain meds don't even works. I just need someone to talk to can you help me

Washington State Lupus Chapter

Hi Joy,

Here is the link to the Pacific Northwest lupus chapter. You can contact them and ask them about support groups in your area. Hope this helps!

http://www.lupus.org/webmodules/webarticlesnet/templates/pacificnw_home....

Person who feels trapped & their dr has no support

Please find another specialist to help you fight your illness.Your dr should be working with you to fight your illness.

Lupus Fatigue

Can you suggest any Support Groups in the Spokane WA area??
I am also feeling very overwhelmed living with the daily pain, inflamation & fatigue. Some days I feel like just sitting & crying, or throwing in the towel.
HELP!