Living with ME/CFS
It is a painful process to come to grips with having a chronic illness. Living with ME/CFS—as with all chronic illnesses that impose limitations—requires information, support, and perseverance. But it must be done if one is to move on with ones life. Here are some thoughts on living with ME/CFS and other infection associated chronic conditions.
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Learn all you can about your illness
Education is one of the most important components in the treatment of ME/CFS and FM and knowledge will empower you. This website is a good place to start. It contains significant information as well as helpful links to other vetted sources. Look for medical articles published by physicians who have specialized in the treatment of ME/CFS, and subscribe to newsletters published by major organizations. (Subscribe to the MassME newsletter.)
Find community
Living with ME/CFS can be isolating. Yoy may find that coping with the illness requires you to give up aspects of your life—a job, a hobby, a sport—that provided a sense of identity and a significant part of your social life. Also, because the illness is still not well-understood by the general public, you may find that friends and family are slow to understand its impact on your life. Speaking with and listening to others who are grappling with the same issues can be life-saving. Try going to a couple of different support group meetings or joining one of the many illness-specific discussion forums on social media platforms. It may take a some experimenting to find a group that is comfortable for you.
Listen to your body and become attuned to its signals
No doctor will ever know your body as well as you. Recognize there will be new boundaries that you cannot push through. Discuss and analyze what aspects of your lifestyle may be aggravating your condition and plan changes accordingly.
BREmember to pace! Be extra careful on those days that you are feeling exceptionally bad; reconsider if you should go out (especially getting behind the wheel) to take care of a particular errand or visit. There are times that it may be better to postpone it, or call to see if someone else can take you.
Allow yourself to grieve for your loss of wellness
Grieving for your loss of wellness is a normal process consisting of several phases:
- Denial and isolation (a defense mechanism)—a time during which we collect our thoughts.
- Anger (a normal and even a necessary emotion) can be exhibited in a number of ways—sarcasm, gossip, compulsiveness, and intolerance. It is important to find appropriate ways to express and direct this anger.
- Bargaining is when you try to cure yourself with good intentions and realize these efforts are in vain.
- Depression can set in when you realize that neither anger nor good intentions will make the illness go away. It is normal to experience some degree of sadness when you confront your loss of health and previous lifestyle. You need to let this phase run its course, but if this sadness reaches a point that your basic daily functioning becomes extremely difficult, then professional intervention should be considered. In due time, you will regain a sense of proportion. You start to realize that, although this illness has closed some of life’s paths, the journey can proceed on other, equally challenging and meaningful paths. It is helpful to take stock in what remains, rather than fixate on what is lost.
- Accepting the illness and changes that this illness brings does not mean that you like what has happened, but that you are working with reality, striving to have more of life rather than less, and emerging as a “new” self.