Rheumatic conditions, like any other chronic illness, can be very difficult to manage and can greatly influence emotions. For example, those who have been recently diagnosed have to accept and integrate their “new bodies” into their existing lifestyle. Changes like this that are limiting can be challenging and a difficult adjustment. Also, a lot of times, we identify “who we are” by “what we do.” This can get very confusing when unwanted lifestyle changes occur resulting in low self-esteem and depression. Pain can also affect an individual’s mood and make it very difficult to stay motivated in order to make the necessary adjustments your body needs. Not only do rheumatic conditions impact the individual, it also affects loved ones. It is painful to see someone you love suffering (physically, mentally, and emotionally). As the effected person is undergoing many changes, it can be difficult to understand what he or she is experiencing. This is exacerbated when both parties stop communicating—which sometimes happens with the intent of protecting the other.
Communication is essential. I can’t emphasize that enough. Unwanted changes are difficult to accept and can also add additional stress to existing communication styles. Patience and acceptance that the “couple” is affected is also part of the coping process. Sometimes couples can effectively work on communication alone, but it can also be beneficial to seek professional assistance (i.e., psychologist, counselor, pastor, etc.).
As personal and physical aspects change, intimacy can change as well. However, those changes do not have to be negative. Each experience with a rheumatic condition is very individualistic; it requires learning how to understand the changes in your body and reading how your body feels at any given moment. With rheumatic conditions, symptoms can fluctuate due to multiple reasons, such as the weather, activity level, pain, emotions, and stress. Partners need to learn how their loved one experiences change. It is important to keep in mind that living with this type of medical condition is a two-way street.
In addition, flexibility is important. While everyone’s mood and physical state can be unpredictable, it is more unpredictable with a rheumatic condition. Your mood could be positive—but physical pain may change that. There are many levels of intimacy and many ways to express it. Learning how to adapt and be flexible can actually increase closeness between partners in many ways. It’s a journey couples go through together; the journey itself can foster a new type of intimacy not yet experienced.
Understanding symptoms together is a form of intimacy. As Valentine’s Day approaches – if you typically celebrate it together, then there would be no need to change this due to a rheumatic condition. No matter the day—communication and understanding is needed. Given unpredictability of flare-ups, I encourage everyone to remember intimacy is more than a physical expression. There are many ways to be intimate and express your love for your partner. Having this understanding is just one way to approach the varying aspects of living with a rheumatic condition.
Dr. Julia Kim is a Clinical Psychologist at Hospital for Special Surgery. Dr. Kim is the first Clinical Psychologist to formally work within the HSS family and her focus is to develop an Integrative Care Program, designed to incorporate psychological services to a multi-disciplinary care team. She works closely with physicians and surgeons to optimize the best possible medical outcome.