What Happens When Lupus Is First Diagnosed?
The patient will probably be both overwhelmed and glad to finally have a diagnosis. The newly diagnosed patient may also experience feelings of anger or sadness over knowing that they have a chronic disease. They may not know exactly what to say to family members or co-workers about their disease or what having it will mean regarding their ability to function at work, in sports or in most any activity. They will have lots of questions about their future and how lupus will affect it.
There are some tips that may help the new lupus patient to adjust to living with lupus.
1. Educate yourself, your family and friends about the disease. The more you and they understand about lupus, the more your symptoms will make sense and you can manage them better.
2. A positive attitude goes along way in any disease.
3. Find out what support systems you have at your disposal at home, work and at school.
4. Make a list of your needs and then discover ways to meet them. Do not be afraid to ask for assistance.
5. Set some goals about what you would like to do each day and decide on the best way to achieve your goals. Do not forget to ask for help from family and friends.
6. Utilize your medical team, they know a lot about lupus and can help locate resources for you. Like most diseases it is important to learn how to manage it well, so that it does not control you.
You will need to learn how to deal with the following issues:
Fatigue – this is a common element of lupus. Fatigue is a chronic state. You will feel like you may be missing out on a lot of activities because of your frequent need to rest.
You will experience joint pain and stiffness. This will have an affect on you daily, as chronic pain can be very depressing.
Be aware of physical changes that you will be noticing, like sores in your mouth or nose, drug-induced weight gain, excessive hair growth and swelling. You may also experience hair loss. These physical changes can cause you to become emotional and you will need to learn how to adjust and deal with these changes.
Your sun sensitivity will cause you to wear protective clothing and gear or miss out on a lot of outdoor activity.
Be aware that you may experience some drug side effects such as: anxiety, mood changes, depression, forgetfulness, changes in personality, and possible and psychological problems. Those who are around you may benefit from knowing about these side effects, so they will understand if you should experience them.
Depression is a common feeling when dealing with a chronic disease for the first time. It is understandable to go through a period of struggling to grasp all of the ramifications of the disease. You may feel a deep sadness. The ability to express how you are feeling can be good for you and for those around you. Keep good communication lines open between the patient and the medical team responsible for the care and well being of the lupus patient.
It is normal for family members, friends and acquaintances to be concerned for you and your future regarding home, work or school. This is the time to be honest about how you are feeling and coping with the diagnosis.
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