In addition to the numerous, various, and changeable medical symptoms that are part of CFS/ME, people have to deal with non-medical fallout. Below are a few examples:
Emotional issues. These have been covered somewhat already, the main one being depression – not necessarily a symptom of CFS/ME but often a subsequent result, many people with a chronic illness develop depression to some degree. The source of emotional difficulties may lie with the illness itself, (frustration, guilt, anger etc. over new limitations and sufferings) or with outside sources such as how other people treat you and react to the changes you have to make. A greater portion of time spent at home and/or alone can bring its own issues, and then fear and self-restriction can creep up on a person with CFS/ME if they’re not careful.
Relationships. Many people with CFS/ME find they lose friends, fall out with family members, break with partners, struggle to maintain dealings with work colleagues. . . This is understandable when you consider you’re going through a major life change, where many of your routines and habits will need to be altered, and you might not remain exactly the same person as before. It doesn’t make the ordeal any less painful. There is advice available on how to talk to other people about CFS/ME, and this may help, but some people will simply never understand the condition no matter how much either of you try. You may be able to stay friends with these people, you may not. If you usually end up feeling bad after seeing a person, it may be you have to make the decision not to see them any more: you will most likely have enough to feel bad about without someone else making things worse.
Personality changes. This is not a definite thing, but it seems to me that if you have a serious, long-term condition which has a history of other people misunderstanding it and treating sufferers poorly because of it, you are more than likely to see some changes here. Especially as, if you are to have any hope of managing the condition, you need to make life-style changes. Depending on the severity of the symptoms, changes may only be small, they may be short-term. . . or they can be permanent. Smaller changes might be that you take up a new hobby – yoga to help with stress, a craft to fill in time if you have to reduce your working hours. Your mood may become more uncertain, especially while you first adjust, and later it could depend on if you’re having a good day or bad.
A bigger change might be if a lot of people around you see you as becoming withdrawn, lazy, selfish – very negative viewpoints on what you have to do to manage CFS/ME. Having to give up work can also leave people with something of a difficulty, both emotionally (work can be very tied in with identity and sense of purpose) and practically (what to do about money, finding a useful/productive/fulfilling way to spend your time)
Money issues. These arise from having to reduce your hours, go to part-time work, or give up work altogether. Having money worries can lower your self-esteem and leave you feeling inadequate, take away your self-sufficiency, and cause additional stresses. It can also have a negative impact on your diet, and limits your available activities. It’s hard/impossible to get disability benefit when you have CFS/ME unless you are in a bed-bound situation and have no possibility of working at all.
Filling your time. This can be challenging as you have to suit your activities to your current abilities, and these can vary hugely. It’s also hard if you’re used to being in work and you suddenly find yourself with empty days to fill, days when you can’t do things you used to do on a day off.
These are a few of the non-medical things that may not be immediately apparent to either those diagnosed or those around them, but I believe (unfortunately) that all people with CFS/ME will face these at one time or another.