Sticks and Stones Part II

Sometimes people can be well-meaning, but their words can still hurt. We polled our friends on our Spoonies for Life  (now The Unchargeables) Facebook page, and asked, “Which things do you want people would stop saying to you? (even if they mean well.)” You can read the first article here: Words Can Hurt

Here are some responses from our Spoonie friends:

With the current changes in the use of opiates to treat pain, doctors are using different medications to treat us, and often it leads to even more pills being prescribed which are not opiate related. And many of us have more than just one illness, which adds more medications. Unfortunately, our friends and family do not always understand that many different symptoms and illnesses sometimes means the use of many pills in a day.

This is so common for the majority of us! We do focus on the pain, because it is there every moment of every day. It may be low pain, but we still need to pay attention to it so that we do not over do things and hurt ourselves worse. We need to plan around it. There are so many things to consider…if you stand at the stove making supper, it could hurt back and legs, if you are going to the store, do you have enough energy and what devices will you need to use to get through it? And then our initial feelings of embarrassment when we need to use those devices.

OH! If people could only understand the feelings of uselessness and helplessness we feel when we can no longer do the jobs we have loved (or even tolerated!) And the guilt we carry when we have to call in sick or go home AGAIN. Or the physical symptoms of overdoing things by trying to stay at a job longer than we should because we are not ready to give in. And the medication we needed to just make it through the day. We don’t want to be in this position and it isn’t easy for us to make the decision to cut down at all.

Invisible illnesses can be difficult for people to understand. We really do not LOOK sick. If we had a broken leg or an oxygen tank, or a wheelchair, they would not blink when we use our handicap tags. They cannot understand, unless they know someone in our position, that walking and doing can be just as difficult for someone with an invisible illness as it is for someone with an obvious handicap.

These friends mean well, they truly think they are giving good advice. But after all of the testing and procedures we go through, sometimes we know more about our illnesses than the doctors we see!

There is a fine line between acknowledging that we have a chronic illness, and yet understanding that the illness does not define us. We can smile, have fun and enjoy our day, but that does not mean we are healed, or not necessarily in pain. I can be “pretty good” and still be hurting. It is a difficult concept for others to understand.

Some of our illnesses come with a variety of symptoms. Some are always present, some will come and go. Our lives are often disrupted by a new symptom or co-morbid condition. So sometimes it does seem as if we always “collect” problems and our friends and family don’t see that these problems are simply tied to our chronic illness.

LUCKY? First of all, this woman clearly didn’t think before she spoke. Often people don’t consider that using a wheelchair, or being home all day because we cannot work, are not choices we have made for ourselves. They see it as being free to nap and relax, while all we dream of doing is living a “normal” life. When someone says things such as this, they likely just didn’t stop to consider our situation.

We often are hurt by the things others say. Most of the time these people sincerely do not mean to be hurtful. They simply have not had to experience things the way we do when we have a chronic illness. Especially since there are so many different symptoms and the illnesses are presented differently in each of us. While they should take the time to consider their words and learn more about our specific situation, we also need to remember that they honestly have no idea that they are being hurtful. These times give us a chance to speak up and tell them that their words have offended, upset or hurt us and explain why. If we do this, they are likely to think before they speak the next time.