The ME/CFS Society of NSW Inc.

Telling other people that you have ME/CFS is not always easy. Because there are still people who do not accept that this is an organic illness, there remains considerable scepticism in some quarters and disparaging terms like "yuppie flu" are still used. With increased awareness and education, this situation is changing, but knowing who, when and what to tell other people can present a problem.

Your Family
Your family's initial reaction may mirror yours - maybe a mixture of grief and relief. Because of your symptoms and behaviour, partners and children may have been harbouring secret fears so scary they could not even mention them. Young or old, the people you live with need to know how you feel - physically and emotionally - if they are to provide support and come to terms with the changes that follow.

Because of its unpredictable and wide-ranging effects, living with ME/CFS can be difficult. In the same way, so can living with and caring for someone with ME/CFS, and personal relationships may come under great strain. The condition can also affect your love life, adding to the stresses. Partners and other carers often benefit from talking to people in the same situation, and the Society's care support groups can help here.

Other relatives - such as your in-laws - need to know too, or they may get a very wrong impression of what's happening. The last things you need to add to your difficulties are misunderstandings or even accusations of laziness or malingering!

Your Friends
Having ME/CFS is nothing to be ashamed of, yet many people are reluctant to let friends and neighbours know about their condition because they fear the reaction will be negative. Who and how much you tell is up to you - but a good guide is to look at the level of emotional and other support individuals have given you in other areas in the past. That's often a good indicator of the response you're likely to get now.

ME/CFS can also make maintaining a social life very difficult, and if you have previously enjoyed a range of energetic activities, the change to less active interests (or even no-action activities) can mean a drift away from regular companions. But the more they know and understand about ME/CFS, the more chance there is of maintaining friendships.

Your Doctor
Let's be honest - people with ME/CFS are not the easiest patients in the world for a doctor to have. The condition is chronic, the symptoms varied, the severity constantly fluctuating - and there is simply no magic pill or procedure that offers a cure.

Your relationship may already be strained, especially if reaching a diagnosis has been a difficult process. There are still some doctors who reject ME/CFS as a viable explanation. Fortunately, at the same time there are an increasing number interested in the condition and its effective management, and who can and do provide support and help. Having a supportive health professional - whether it's a GP or specialist - can make a huge difference. If you are having problems with your doctor, talk to the Society.

The ME/CFS Society (SA) Inc and the SA Department of Human Services have developed a new set of ME/CFS Guidelines for General Practitioners which is now available. Please use the link below to view and print the guidelines (17 pages when printed).
Click here for the ME/CFS Guidelines for General Practitioners. (PDF format, 460kb).

Your Employer
ME/CFS can affect your work life in terms of both your environment and your activity level. Again, what and how much you tell your employer and workmates will vary according to your situation and symptoms, and can be tricky to assess. Some employers and colleagues are supportive; unfortunately, others are not. But judging by past history, you will probably have a fair idea what the response would be.

Some people with ME/CFS are simply too ill to work, especially in the acute stages. But if you are working and need to rest during work hours, take a lot of sick leave, are often late getting to work or your work itself is affected, perhaps it's best to be upfront - or the reasons may be misinterpreted and your job jeopardised.

As far as sick leave is concerned, the situation is the same as with any other chronic illness: if you need a lot of time off, try to negotiate an arrangement with your employer. Again, if you have problems in this area, the Society may be able to help.