If you have a friend or loved one who suffers from CFIDS, please pay close attention to this post. CFIDS does not only affect the patient themselves, but also those closest to them.
As a loved one, you have to know that this disease affects every area of the sufferer’s life. It affects their career, activities, finances, education, self-esteem and relationships. Those who were once secure and self-confident with themselves may lose self-esteem due to lack of productivity and not being able to participate in activities that they once did before CFIDS. Everything in a CFIDS sufferer’s life changes: no longer able to keep up with responsibilities, not able to care for others, let alone themselves, they may gain weight and have other appearance changes.
CFIDS brings with it new challenges to relationships and can worsen existing relationship problems. I know of this first hand – it was a big part in the demise of my first marriage. Because the symptoms of CFIDS is very unpredictable, the sufferer does not know from minute to minute, hour to hour, day to day what activities he/she may or may not be able to participate in. So for a CFIDS sufferer to make plans in advance it is very difficult. Often they will need to back out at the last minute. Please be understanding of this. It is beyond the sufferer’s control and has nothing to do with how they feel about you personally. Their bodies just will not allow it. With CFIDS, overexertion leads to relapses, and this places a tremendous strain on friends and loved ones.
CFIDS affects each person differently. Some with CFIDS are able to work while others are not. If you know more than one person with this disease and you notice varying differences between the two, please do not compare. A CFIDS sufferer who is unable to work also has extra stress added (which is not good for their symptoms) because of the increasing financial difficulties of the now non-existent or reduced income.
The CFIDS sufferer may also become more dependent on others and seem selfish to those around him or her because they focus on attending to their own needs first. In order for a CFIDS sufferer to survive, this has to be the way it is. Whether it is viewed as selfish or not, the sufferer has very little energy to care for themselves let alone others – their thought process has to change in order to make it through the day. Their health has to come first. Friends and loved ones may feel abandoned, forgotten about and neglected. Please understand the sufferer is doing what has to be done for their own well being.
Because there has always been a lack of understanding regarding CFIDS by the medical community, employers, the media and general public, those with CFIDS often feel the need to prove their illness. Please know that we are not seeking special treatment or attention, but are looking for respect, acceptance, support and acknowledgment that we are very ill, even if sufferers look healthy.
How can you help someone with CFIDS?
- Educate yourself through the Internet, books, whatever means necessary.
- Validate and acknowledge the seriousness of the illness.
- Be as understanding, patient and caring as you can be.
- Offer to help with running errands, managing finances, helping to fill out disability forms, etc.
- Enjoy activities together as tolerated and talk about fun times that you have shared. Be sympathetic and flexible if plans have to change.
- Avoid comparisons with the way things used to be and comparing with other sufferers.
- Keep the lines of communication open. Be willing to listen, but let the sufferer know when you are overloaded and need a break.
- Memory impairment may cause the sufferer to interrupt because if they don’t say what they are thinking immediately, they will forget. If interruptions are frequent and/or distracting, suggest that the person make notes during the conversation.