Talking with Friends and Family about AS
Chronic conditions like ankylosing spondylitis can have a toxic effect on relationships. THey are especially troublesome if one person is skeptical about the source or the severity of the pain, and the other feels that he or she isn’t receiving the proper understanding and support.
This relationship trap is particularly common for those living with an “invisible” disease. When someone is sick people often expect to be able to see some sort of sign that it is true. If they do not see something that proves the person is sick then they may assume that there is nothing wrong, or forget to make accommodations. Compounding the problem, the person who is ill may hesitate to communicate their needs, emotions or pain.
In a study published in 2009, psychology researchers from Wayne State University in Detroit followed 106 couples in which one partner had a chronic pain condition. They found that people in pain who felt entitled to more support from their partners were more likely to have more frequent or exaggerated thoughts about the extent of their pain and disability – also called catastrophizing.
This unhealthy coping strategy was also associated with passive ways of asking for help – another communicative action that tends to backfire. For example, someone who expected support but didn’t know how to communicate their needs was more likely to express frustration indirectly, like sighing or moaning, or to react with anger or disappointment. Meanwhile, the other person didn’t know what was expected and reacts to the aversion or aggression in kind, creating a vicious cycle.
The good news is how you communicate about pain matters. The following suggestions can help you to develop the knowledge and skills you need to successfully talk about chronic disease.
Seek education. Consider treatment a joint effort. For couples, both partners should try to learn as much as they can about the pain condition and should attend doctors’ appointments together to learn about options for treatment. For instance, it’s often helpful for both partners to hear a professional opinion on how much exercise and movement is healthy for the person with AS, and to what extent they should help with housework and physical tasks.
For those like friends and children who won’t be in the doctor’s office, share information and encourage their questions. The best antidote for fear and helplessness is real information.
Be clear about your needs. As the individual facing arthritis, you may need to spell out what your needs, both on a practical level as well as emotionally. While it may seem like it should be obvious to the other person, it may not be. Talk to them about how your AS makes you feel.
Ask others about their needs. Sure, you’re the one with the disease. But AS can affect all of your family and friends, and your relationships with them. Remember that support goes both ways. The best way to help others face your chronic condition is to ask them what he or she needs and how you can best help them. Just like you need reassurance and support, they may need some too. It may be up to you to reach out and encourage others to talk about how they are feeling.