What do you say to others when you live with an invisible illness/disability – Chronic Pain
Barby Ingle- Excerpt from RSD in Me©
You can never take back information once it is shared but you can always wait to let people know later. If you choose to disclose that you have chronic pain, decide when and how to do so. If there is time to prepare ahead of time, it is a good idea. Take time to think about different situations and how you wish to handle them. Many people feel it is not their place to ask about your physical conditions, but knowing about chronic pain and your disease specifically would help them understand where you are coming from with your thoughts and actions. When you are deciding to disclose your chronic pain and limitations, make the decision whether or not to let others know about your invisible disability.
I know a chronic pain patient who liked a neighbor and was interested in dating him. He often helped around her house with handyman projects, and she would see him out on his porch and go out and talk to him. Eventually, he asked her out, and they had a great time. Over the next few months they had dates scheduled but she ended up canceling a lot of them. She was just in too much pain. He began to think she was not interested in him and started to pull away. Friends encouraged her to tell him about chronic pain and what she is going through. She did, and he stuck around for a while. In the end it did not work out, but they remained friends and it helped her see that you can still have a social life despite the chronic pain. If you’re in this or another social situation you should think about the following when deciding to disclose your chronic pain and how it affects your everyday life. Are you able to participate in the activities at hand using your coping skills and tools? Do you need accommodations? Are you able to perform the activity safely if you choose not to disclose? Secondly, do you think they will react in a way appropriate for the environment you are in? If you are not sure, you may want to wait until you are in a private setting. If the situation becomes an intimate relationship, it is important to share even if it means losing the person. It is not fair to them or yourself to keep information back. If your disability is in remission or typically under control, is there a reason to disclose? Possibly the education you give them may help someone else they meet along the way. It is possible that flare-ups on your part may keep you from future activities. Finally, how will you address misconceptions about your disability when you disclose? Some people do not believe in treating pain with narcotic medications or have a bad experience with someone else in their life with chronic pain. Having them not understanding can lead to a divide. Also, not telling others is not an option if you are in a situation that can cause others harm. For instance, when getting on a plane, you cannot have the exit row. If assigned by mistake, notify the flight crew.
When choosing situations and activities where you do not want to disclose your disability, take time to carefully analyze the kind activities you are able to do and plan accordingly. Remember, you can always reveal more information later as needed. The following are some of the risks and benefits of letting others know about your invisible disability.
Risks
- Many chronic pain patients are seen as a drug or attention seeker, or as mentally unstable.
- You may face discrimination, subtle or direct, from work, friends and caretakers.
- You may face envy or resentment for receiving special treatment from the others in your life, especially with children.
- You may not be asked to participate in the event or future activities, if the other person does not understand.
- You will have to give up your privacy to receive help bathing, eating and corresponding with others.
Benefits
- Letting others know about chronic pain and what you are living with daily can give you a sense of purpose and support for yourself and others in your life.
- Openness with your doctors, family and public can create understanding for others with invisible disabilities.
- You may be an ambassador for others with disabilities as a public educator, mentor or on a personal level.
- Your abilities, attitudes and success may counteract any discrimination. I think, if I keep doing what I can, they will eventually see. Even if they don’t get it, you can still be successful.
Barby Ingle- Excerpt from RSD in Me©
