There is Nothing Wrong with Questions, Just Be Sensitive About How You Ask!

"What do you mean you have arthritis? Isn't that something older people get?" When I was 15 years old, I was ignorant about illness and thoughtless about how my questions could impact a person's emotions and experience of pain. At that time I asked those insensitive questions to another 15 year old girl who had rheumatoid arthritis. I remember the girl's reaction; answering my abrupt questions, and responding to my surprised expression with frustration and with almost a sense of obligation. I recall how she explained to me that rheumatoid arthritis is different from the arthritis people get because of old age, and can impact a person of any age. She described how she had to take medication every day and how she often experienced pain in her joints.

I am grateful for having had this experience at such an early age. Even though I did not truly understand what it means to live with chronic illness at that time, seeing this girl's reaction to my lack of understanding made me think more about what it must be like to experience pain on a daily basis. Oftentimes, people do not think about arthritic pain as something potentially life altering. The false notion that arthritis is not something young people have to struggle with, an idea held by many, is one that can significantly contribute to the emotional suffering of adolescents and young adults who live with arthritis. It may feel confusing to be an adolescent or a young adult who looks youthful, while being aware that his/her body may feel more like what his/her grandmother describes rather than like what his/her friends do. Frequently, this observation may make some young people feel ashamed or wary of discussing their arthritic pain with others their age (e.g. my awful reaction as an adolescent).

Arthritic pain is not an easy physical sensation to experience. Sometimes the pain can be minor and other times it can be very intense. It at times can be a struggle to get through the day without frequently focusing on and attending to the pain. Seemingly simple tasks may become challenging and may serve as constant reminders of the pain and of the arthritis. For example, there is a reason certain medications come with easy open arthritis caps. It can be extremely painful to open a container, which most people take for granted. Other things that are supposed to be quite natural, such as washing a dirty pot, opening a heavy door, turning a door knob, turning a steering wheel, or even holding a baby can feel like a Herculean task. Most adolescents and young adults do not commonly struggle with such situations, which can contribute to others' curious yet at times problematic reactions. Comments of surprise or disappointment from others for not being able to do every day tasks can be extremely hurtful to a young person with arthritic pain. Such interactions with others may ignite or amplify negative thoughts and feelings, such as "I hate myself, I hate my body, I will never be able to have a normal life, I might as well will stop trying, I feel like such a loser", and can make the person living with the pain feel very alone and misunderstood.

It is easy to forget, and sometimes some people are not even aware that pain can be influenced by emotional states. Negative emotions can make pain more intense, and positive emotions can distract from and lessen pain. For example, surprised, gawking comments from others place emphasis on the ways an illness or pain alters one's life. Such reactions can leave the person who experiences the pain with thoughts such as, "thanks for the reminder. As if I already didn't know it is unusual for me not to be able to wash my pots." In effect, these comments, which may contribute to a person feeling badly about things related to his/her pain, is also a manner of focusing on his/her pain more, which does not help with alleviating the pain, but rather may serve to intensify it.

Sometimes it may seem that these situations are impossible to deal with; however, there are moments when there are many possibilities. Some of it comes down to education and genuine curiosity. Person  A notices that his/her friend (Person B) is walking with a minor limp and stopping every few steps. Person A asks, "What is wrong?" Person B says, "I am in pain. The arthritis in my foot is acting up." Rather than saying something like, "What do you mean you have arthritis?", Person A can respond with questions that show interest and curiosity, and even care, such as "Is that how your arthritis affects you? What is it like to have arthritis, if you don't mind me asking?" Rather than making statements or questions of surprise, which would place focus on the rarity of the situation, sensitive questions of interest can place focus on the interpersonal dialogue happening in the moment. Such a dialogue may place more attention and focus on the interaction between the two people, taking the focus away from the pain itself and placing it on the conversation. Additionally, such an interpersonal interaction communicates that Person B has some knowledge and experience of something that Person A would like to know more about, rather than communicate that there is something strange or wrong with Person B. It can be quite an empowering experience for Person B to be able to educate others on what it is like to live with arthritic pain.

There is nothing wrong with asking questions or being curious about something you are unfamiliar with, but being sensitive about how one asks the questions is important to think about. Most people know that words can hurt, even more than punches at times; however, it is easy to forget about the tone in which words are stated, the facial expressions or bodily movements one makes when asking a question, and the judgments we communicate by the manner in which we choose to share our words. If you are on the receiving end of such questions or statements, it may be very helpful to try to educate others on how such comments and reactions make you feel and why. Oftentimes, people hurt each other not intentionally, but simply because they are not aware of how they have been hurtful. Keep in mind the significance of open dialogue and education.

Remember, if you are having a difficult time being able to openly share your feelings about how others are making you feel about your illness or pain, reach out for help. Join a support group with others who are going through the same thing that you are, or speak to a psychotherapist who can help you find a way to better communicate your needs. It is not always an easy thing for someone living with illness to educate others on his/her experience, but a little help with this can go a long way.