Living with lupus

Living with lupus is not simple at all. But it is possible.

First of all, you might feel relief, to get diagnose and answers on your unanswered questions. However you might get more questions than answers in the end. It doesn't matter what form you suffer, whether mild or serious, you still need proper medical care. You have to make changes in your life, probable you have to change your lifestyle and attitude. You need to learn to take things under control, to minimalize risks of flares etc.

The most important is to really take control, instead of the control taken by the disease.

Your feelings probably include:

• Anger and depression because of sudden chronic disease, not being the healthy person any more, as before.
• Strange feelings what to say to others, your friends and colleagues. I felt like naked, or pushed away from the normal relationships.
• Guiltiness; I feel guilty for being sick. Everything has changed in our life. You can feel that you are the reason for cancelling happenings and things not the disease itself.
• The difficult situation about job. You are not able to work as before.
• Unsure expectations, you can be even scared that you die. For me it is mainly that I am scared what would happen to my kids.  

Sometimes it is really hard to accept your new look. Medication and disease can change your appearance, such as rash on your face and neck or moon face from the prednisone, loss of hair etc. It requires put up with the disease. May be you will need to psychological help and you do not need to feel ashamed. Chronical pain, chronical fatigue, change in your appearance would shake everyone. And it could be also just a result of  prednisone. Be aware of the side effects.

The biggest concern is also family. It is not only the person having lupus but also family members who need to adapt to the new situation. They can be scared or totally ignoring the situation and your needs. 

But remember you can live with lupus valuable life!!

Have a nice day!!