By Jeannette –
One of the hardest things to do is say “no” to something you really want to do. For those of us who live with chronic pain or illness, those “no’s” are usually much more frequent than a “yes.”
It’s a fact of life we need to take care of our health, and unfortunately when we DO accept those invitations we are subjected to encountering triggers and the repercussions of overdoing it, as well as potential negative opinions of others.
1. There is often judgement if a person with chronic pain or illness accepts an invitation and then is in distress or unable to keep smiling and maintain an optimistic attitude.
There is frustration on both ends. Honestly, it does stand to reason that we shouldn’t be there if we are in a high level of anguish, and we shouldn’t be putting our distress on others—but what would happen if we do not attend? Often we face guilt, even manipulation.
We must not accept that. The catch-22 is that we must go regardless of our symptoms and maintain an expected display of optimism and positivity, never discuss how we are truly feeling, even to explain our absence or the need for assistance. However, if we don’t attend and try to keep our pain hidden, we face guilt, misunderstanding and eventually isolation.
2. If we (the people with pain or illness) do not accept the invitation, it is often met with criticism, frustration, manipulation, or guilt.
In most cases, we truly want to accept an invitation from someone. Unfortunately there is typically no understanding that the person wants to be there if we decline due to a flare up bad enough that we will not be able to hide the effects of our symptoms—not to mention that the struggle of the type of event or the distance to get to the event may trigger symptoms.
3. Finally, the third option is trying to go and leaving early.
Again, instead of gratitude for the effort it took to try, our rebuttals are heard as an “excuse.” Little do people know that going to a function often takes quite a lot of pre-planning to have the best possible outcome for us to enjoy the outing. Furthermore, even if successful, attendance at any event requires a recovery period for the person with chronic illness.
Typically with chronic pain and illness the patient is always at a high level of pain. After many years of dealing with this, they can learn to “function” at a “new normal” level of pain. Someone early on in an illness or an average healthy person could not smile or function at all. Then there are times of “flares” or when medication wears off (the clock strikes 12:00) when that high pain level goes past our “normal,” and we shouldn’t be at an event.
Would someone in acute pain be treated the same—someone with the flu or a broken leg? Most chronic pain patients do not want to project their pain onto others—they’ll hide or smile through it. However a lot of judgement, guilt, fear, anger, selfishness is projected on to them, which is unfair.
Next time you invite a chronically ill friend to an event, take these notes to mind. But know this: in most circumstances, we honestly DO want to accept your invitation!