For the most part, people who are suffering from chronic pain/illness often don’t talk about it much, it is often easier to suffer in silence. When we actually do talk about it several things tend to happen:
We get bombarded with advice. People feel they must fix you. We are offered medical advice, told about the latest tik tok craze that “has cured loads of people”, told to be more positive, try yoga, eat clean, exercise, lose weight, meditate, and the list goes on. Some people will avoid the topic because it makes them sad or uncomfortable. Some won’t believe you. For the most part most people mean well and do care, but it is exhausting (for them and for us). Talking honestly about your pain brings it to the forefront of your mind. We become hyper aware of it. You also feel raw and exposed…and 100% like you are whining. You also feel that you are not being heard or understood. I mean, how could you be understood? Nobody can understand it unless they have lived it. Our illness and/or pain take up a lot of space in our heads. It is a huge part of our every day life. If we talked about it all the time, who would want to be around us? We don’t want to worry, or stress out our family and friends either…we want to protect them from the knowledge of what we deal with every day.
If you live with chronic pain, your experience needs to be shared and you’re the best person to do it. Pain is invisible and personalized…but it is also a huge part of you and misunderstandings can lead to emotional distance, and nobody wants that! Living with pain doesn’t get easier and life doesn’t get better by not talking about it. That choice only increases the feelings of invisibility, isolation, and disconnection. So, how do we deal with talking about it?
Communicating about the type of pain, diagnosis, symptoms, and self-care helps others to understand what you may need. Explaining it by discussing it’s impact rather than the intensity is often more helpful. This is because they have no frame of reference for the pain intensity but they do for it’s impact. For example, instead of saying “My pain is an 11 out of 10, it’s killing me” you could say “I miss going to the gym a few times a week and riding my bike. Lately, it is hard for me to even sit or stand in one place for 15 minutes.” or “I would love to go for a walk, but I will need to rest every 15 minutes or so, will that work for you?” Let them know that the most supportive thing they can do for you right now is not to try to make it all better or make it all go away, but to just be present with you and listen without pity, trying to fix it, or interrupting.
Choosing who to tell and how much information people need to know is a personal choice. At a minimum, close family (and friends) need to have a basic understanding and knowledge of your condition in order to understand you. Chronic conditions can affect intimacy and relationships can suffer. Discussing specific ways that your pain or your condition affect your daily life and that you have good days, bad days, and horrible days. Actively listening to their concerns, questions, and worries. Explaining that things change daily (if not hourly) and they should not take it personally if you need to alter or cancel plans, or are having a bad day. Explain that you are educated about your condition and it’s implications, that you have a care team and are getting the best treatment for you specifically. Lastly, ask for help. As I said, in general people do care and want to help. Giving a family member or friend a concrete task (such as driving you to an appointment, picking up a prescription or take out, helping with cooking or cleaning, etc.) helps you AND them. Chronic pain not only impacts the individual who is hurting, but it also impacts family, friends, and coworkers as well.
