Lupus Site - a guide for lupus patients and their families



Living with lupus


When you are first diagnosed with lupus, you will probably go through a range of emotions; relief, that you finally have a name for your symptoms; worry, is lupus fatal, can it be cured, do I have to live like this all of my life?; anger, why me?  All of these emotions are normal & you will probably go through many more during the course of the disease.

It can take a long time to come to terms with having lupus, knowing that there is no cure.  It can have a big effect on your life & the lives of those around you.  But there is hope you can live well with lupus.

It is important to accept that you have a chronic illness, that your life has changed.  You will have to accept help from other people, both emotional & physical help, don't feel guilty about accepting help, you cannot expect to do everything yourself.

You will have good days & bad days, remember to take each day as it comes, if you feel tired & in pain, then rest, if you feel well enough, then you can be more active, but don't overdo things.  You might not realise at the time that you have done too much, but it will catch you up later on. If necessary, lower your housekeeping standards, many chores can be done every other day or week, rather than daily weekly.  Delegate - don't think that you have to do everything, other people will be only to glad to help.  After all if you overdo things you will feel much worse afterwards, & less able to carry on as normal.

You may start to feel that you are not well enough to carry on with your job, either because of the pain & fatigue, or because of psychological problems such as difficulty concentrating, or depression.  You may feel that you don't want to give up your job, but it is important to remember that your health comes first, & to carry on working when you are unwell can make things worse.  If the situation arises, try talking to your boss, you may be able to come up with another solution, such as working less hours.  Even if you do have to give up your job, it needn't be the end of the world.  If money is a problem, there are state benefits available. Another option may be to look for a less demanding job, or work from home.  You could look at turning a hobby into a small business.  If you lose your job, don't see it as the end, see it as a new beginning, an opportunity to turn things to your advantage.

Don't turn away from your family & friends, remember that they will be worried about you, & want to help.  They can be a wonderful source of support, talk to them & tell them how you feel.  You may find that you gradually lose contact with friends during the course of your illness, this can be because you are too tired to participate in social activities.  To avoid this from happening try to explain to them how you feel, that you are too tired to go out, suggest an alternative such as them coming round to your house.  If you do lose contact with friends, you can meet new people who are in the same boat as you at support group meetings (see below).

Join a national lupus charity (Lupus UK, Lupus Foundation of America), they will provide you with support (often locally) from people who know exactly what you are going through, and can also provide literature & books on lupus.  A little knowledge is a great thing, learning about lupus can help enormously in understanding & coping with the disease.  There will be support groups that you can attend to talk things over with other sufferers, talking to strangers can sometimes be easier than talking to family members.

Avoid using alcohol or tranquilisers as 'problem solvers'.  They don't solve problems, & turning to drugs or alcohol can lead to addiction, as well as the very real dangers of alcohol/drug interaction.

Identify your fears.  Make a list of them, & discuss with your family or friends.  Together you can look for ways to deal with them, after all 'a problem shared is a problem halved'.

Lupus can affect a person's appearance, & therefore affect self-confidence, but there are many ways of solving these problems.  There are many good coverup cosmetics available (also available on prescription) which can cover up rashes.  Choose clothing which helps disguise or distract the eye from the effects of fluid retention & swelling.  If hair loss is a problem, these days there are a lot a natural looking wigs available.  If you look better, you will be less self-conscious, & consequently, feel better.

f you want support or advice on any aspect of lupus, visit the Message Boards




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