Thursday, November 17, 2011

Support of friends and family

     Support is so important when one suffers from any disease or illness especially when it is chronic.  When diagnosed with lupus it affects every aspect of ones life.  Family and friends that give support emotionally and physically can make a dramatic difference on how someone with SLE copes with the disease.  Lupus has so many symptoms, physical, and emotional, it can cause damage to any part of the body.  The medications taken by those who suffer with lupus can also cause uncomfortable symptoms and stress.  Unfortunately lupus is forever, so people may forget that once one is diagnosed with SLE they will never be cured.  Sometimes friends and family may think because a lupie has a good day that this means they will be fine but I am sorry to say this is not true.  There is no magic pill, vitamin, diet, drink or herb, in fact when starting any type of treatment or diet a person with lupus must get the okay from their rheumy before starting.  So many things that a healthy person may not think twice about can land a person with lupus in the hospital.  Therefore certain types of advice should be thoughtfully considered before given to a person suffering with SLE. 

     The support I have received from my family and friends have  been such a blessing.  Due to lupus making us feel sick and tired so often and that it is unpredictable, makes it almost impossible to make plans.  It is very hard for us to cancel a day of fun or not turn up for a party because we are simply too ill to go.  Not only do we feel bad physically, we are also sad to miss out on fun, and we feel guilty that we are letting our close loved ones down.  It is very helpful to have those that mean so much in our lives to have understanding of our illness, and know that it is not personal.  We are sad that once again lupus has won and we are feeling so bad.  There are so many things I have missed that I cannot get back and for that I morn.  This is why spreading awareness of this disease is so important.  Here are some articles for family and friends of ours that have lupus.

The Lupus Foundation of America

Lupus in the Family

Family life will inevitably change when a family member receives a diagnosis of lupus. Chores need to be redistributed, responsibilities shared, and everyone in the family must try to remain flexible.
There will be emotional considerations as well. As the person with lupus, you may feel guilty about not being able to do the things you once did. You may feel unhappy about the accommodations others in your family have to make on your behalf. Your brothers and sisters may feel jealous of all the attention you are receiving. If your husband or wife, or significant other has lupus, you may feel discouraged because lupus has affected the intimacy you once shared. If your father or mother or other family member has lupus, you may be afraid that he or she will die.
Good communication will be crucial in making sure that home life remains as normal as possible after you are diagnosed with lupus. Sharing information about the illness, including its symptoms, its treatment, and its prognosis, can lessen everyone’s fears and concerns. The most important thing you can do is let family members know the extent of your pain and fatigue. This will help them know when they need to chip in.
A sensible schedule is another good idea. It’s understandable that, after being forced to cancel or postpone favorite activities due to lupus, you may then be tempted to tackle the entire "to-do" list in one day. However, trying to do it all only increases stress and exhaustion, and could trigger a flare. The best approach is to learn to make time for the things that really matter, say "no" to the things that are not as important, and leave the rest of the list for tomorrow -- or the next day.
If you have Internet access, you may want to use it as a quick and easy way to have home delivery of groceries and other supplies when joint pain or extreme exhaustion make driving and shopping too difficult to manage.
A parent with lupus has additional challenges to the already heavy demands of parenting. If you are a parent with lupus, it’s a good idea to maintain a sensible schedule, reassign household chores, and have friends and outside family members you can call on to take over some parental responsibilities. These kinds of adjustments can help minimize disruptions in your children’s schedule and daily activities. And of course, the more rested and less stressed you are, the more quality time you will be able to devote to your children.
Your children will have concerns about your health, especially whether or not you will die from lupus. Children are quite sensitive to a parent’s mood changes, but often do not know how to talk about their feelings of unease or concern. At the same time, they probably cannot help focusing on how your illness directly affects them. It is vital to have good communication within the family. Sharing information with your children about lupus and the changes it brings -- both to your health and to the responsibilities of different family members -- will help everyone.
When a child has lupus, parents will face some different challenges. As a parent you will need to consider the child’s mental and psychological well-being as well as the immediate and long-term physical health issues. Too often children can become identified by their illness -- by others, if not by themselves. Further complicating identity and other developmental issues, certain activities may be less available to children with lupus, even something as simple as playing outdoors in the sunshine. Being aware of the issues your child will face, both in the immediate future and throughout his or her life, will go a long way in preparing strategies and solutions. Above all your child should be encouraged to have and strive for goals and dreams. Even if some of these ambitions have to be changed later on, it is important to let your child know that lupus does not have to control all aspects of his or her life.
Intimacy can be challenging when you have lupus. Lupus and its treatments may cause changes in your physical appearance, and these changes -- skin rashes or lesions, hair loss, weight gain -- may affect your sense of your own desirability. Joint pain, mouth sores, vaginal ulcers, and a decrease in lubrication from the glands can slow sexual responsiveness and make both foreplay and intercourse painful. Pain, fatigue, depression, and certain medications can lower your interest in sex and intimacy. And, if the frequency and pleasure of intimacy and sex fade, the partner without lupus may feel hurt and confused, or even resentful and angry.
But it is possible to regain intimacy and tenderness between partners. Good communication will help counter negative self-perceptions or feelings of rejection, and can keep an amorous spark alive even when sexual activity wanes. Physical adjustments, such as using pillows for support, finding less painful positions, and applying lubricating ointments and creams, can relieve discomfort during sex. Taking a warm shower or bath can help relax sore muscles and joints, and anti-inflammatory medication may also provide relief. Sex aids can help promote a partner’s response to intimacy. Other forms of physical contact -- gentle massage, tender touching, a loving embrace -- can provide intimacy without intercourse. If problems persist, couples should seek the help of a licensed therapist, to help improve communication and offer suggestions.

Lupus Among Friends

A network of friends and neighbors can give the same kind of valuable support as family members: lending a helping hand with chores and errands, offering a sympathetic ear or a comforting shoulder. But in order to give support, friends need to have some understanding of the nature of lupus.
It is not necessary to share all of the details about lupus. But you will want to describe the possible symptoms of lupus and your symptoms in particular. Explain your treatments, as well as the fact that lupus can develop in men and women, teens, and children. Be ready to respond to questions and be careful not to react impatiently to sometimes inappropriate advice and comments. Let your friends know what to expect when the disease is active, such as last-minute cancellations, why usual activities might be scaled back, and side effects of prescribed medications.


  1. Awesome post! I love reading your stuff. It truly gives me reassurance that I am not alone.

  2. Single, thank you so much for reading my blog and commenting. We are all together in our fight and we can all give each other strength and courage. I hope that together we can raise awareness and a cure will be found soon! Best wishes and gentle hugs!

  3. Marissa, Just wondering how you are going to deal with the upcoming holidays, they can be very difficult for us lupies...trying to spend time with family, holiday meals,shopping,decorating...I am having family over for Thanksgiving and I can feel the anxiety creeping in! hugs, Susan

  4. Susan, I am nervous also. I am having my family over and some friends for thanksgiving. My mother and sister will help me cook and my husband will help me shop. I am hoping for Christmas to get most presents online, this is the holiday I get very anxious for. It is usually a very busy time like it is for most people. If I cannot make it to dinners and family get togethers then I will just stay home. I am struggling just to get through a normal day. I hope you have a great holiday season and I wish you the best of health.

  5. I'm with you on the online shopping....that will be my life saver for gifts...going out to stores is a sure way to put me out of commission for hours sometimes days.....but I do LOVE wrapping presents. Happy Thanksgiving to you and your beautiful and loving have lots to be thankful for!:))

  6. Thank you SO much for this log. I shared it on my page, for my family and friends to read. Even though "most" of my family/friends say that they understand, I honestly don't think that they do....or maybe it's my own feelings of guilt that make me think that. Again, thanks for all that you do :)

    1. Hello, thank you for taking the time to read, comment and share my blog! You are not alone in how you feel, no one can truly understand unless they actually have lupus or a similar disease. Sending you best wishes and gentle hugs. xo