It Is Ok that its Not Ok!

People with chronic physical illness frequently hear questions such as, "how are you feeling," " but it is not serious right," "you don't have to change your lifestyle, do you?" Oftentimes before the person with the chronic illness gets a chance to even respond, the questioning person thwarts expansion of the dialogue by saying something like, "I know you'll be ok" or "you're ok, you were always and ok and you will be." Such statements while on the surface appear to be supportive and encouraging can be quite dissonant from what the person with the chronic illness is likely to be experiencing. Depending on the particular illness, the stage of the illness, and various individual factors, the person with the chronic illness may not feel that everything is going to be ok and in fact in some instances things may not be "ok."

Although loved ones may believe that they are being helpful or "keeping a chronically ill person's spirits up" by denying the reality of the seriousness of a chronic condition, they may in fact be hurting the person who lives with the illness. The person who lives with the chronic illness may know very well if they have a poor prognosis, or even if their prognosis is good, they may mourn the changes that have had to be made in life in order to cope with the illness. Even in the best case scenario, it is not ok that a person's body fails in some way and it is not ok that adjustments have to be made. Acknowledging reality does not mean that one cannot be humble and grateful for what he or she still has, or that one cannot be optimistic about the future. Accepting reality and keeping a positive attitude can coexist.

There are times when people who live with a chronic physical illness may want to become nostalgic and talk about what their bodies used to be able to do. Mourning is part of a process of accepting one's illness and current state, and sometimes part of mourning is sharing old memories with others, similar to when a person loses a loved one and then finds himself sharing stories about that person. The person with a chronic illness, who can be any age, may just want to talk about how her or his life used to be before the illness forced certain changes, and may just need someone to listen and let them cry. Loved ones need to know that this is NOT a destructive thing for the person with the illness. It will not cause depression or destruction--it is part of healing. Loved ones need to be able to separate their own anxiety from the person with the chronic illness' anxiety. It is important to remember that people who live with chronic illness, especially younger people with illness, are forced to face issues of mortality and fragility much earlier than most other people do. Oftentimes, the folks with the illness become much more comfortable addressing such issues than their non-chronically ill counterparts. So when loved ones shut down any conversation about how being chronically ill is not ok, the underlying motive is really to prevent themselves from feeling anxious over issues of mortality. It seems like its about the person with the illness but really...its not.

If you really want it to be about the people who live with the chronic illness, then lend them your ear. Let them talk about how its not ok to be going through what they are going through. Let them know that its ok that things are not necessarily ok and they do not have to be something that they are not. Let them cry. Be unselfish and tolerate your own anxiety so that your loved ones will feel free to express themselves to you. This is really what will keep one's spirits up, what will really be helpful, and what will not feel dissonant from the person who lives with chronic illness' experience. Unfortunately sometimes there are people who live with chronic illness who have loved ones who are not capable of putting their own anxieties about mortality aside and who cannot provide this open space for their loves ones. In these cases it is imperative for the person with the chronic illness to seek support elsewhere, either through a support group, in psychotherapy, or from any other person who will let you know that IT IS OK THAT ITS NOT OK!