About Lupus

Lupus Coping Corner

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

Jessica Rowshandel, M.S.W.
Amy Caron
Project Director
Lupus Research Institute

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.


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Lupus Coping Corner

Disclaimer: The information provided by the S.L.E Lupus Foundation is for educational purposes only and should not be used for diagnosing or treating a medical or mental illness, nor be a substitute for professional care. Consult your healthcare provider if you have or suspect you may have a medical or mental health problem.

Amy Caron, MPH is a lupus patient and Project Director of the Lupus Research Institute provider education initiative.  She is not a physician or counselor.  The suggestions shared in this column are strictly opinions from the perspective of a lay person with lupus. Lupus is a very individualized illness; consult a healthcare professional before making any decisions about your care.

The S.L.E. Lupus Foundation does not provide any direct medical or psychological services nor recommend or endorse any particular treatment or therapy. The 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.