Should I Tell Someone About My Invisible Illness?

By Barby Ingle, Columnist

It can be tricky deciding when to tell someone about your chronic pain or invisible illness. You can never take back information once it is shared.

If you choose to disclose that you have a chronic condition or disability, you should decide when and how to do it. Take the 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 your pain and limitations could help them understand where you are coming from with your thoughts and actions.

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 her medical condition and what she was going through. She did, and he stuck around for a while, but in the end it did not work out. However, they remained friends and it helped her see that she could still have a social life.

If you’re in this or another social situation, you should think about the following when deciding whether to disclose your condition and how it affects you:

  • Are you able to participate in activities using your coping skills and tools?
  • Do you need accommodations?
  • Are you able to perform the activity safely if you choose not to disclose?
  • Do you think the other person will react in a way that’s appropriate for where you are?

If you are not sure about the latter, you may want to wait until you are in a private setting.

If the situation becomes an intimate relationship, it is very important to share even if it means losing that person. It is not fair to them or you to hold that information back.

If your disability is in remission or typically under control, is there a reason to disclose? It is possible that flare-ups may keep you from future activities, so it would be a good thing to disclose ahead of time. The education you give them may also help someone else they meet along the way.

Finally, how will you address misconceptions about your chronic condition when you disclose? Some people do not believe in treating pain with narcotic medications or had a bad experience with someone else in their life with chronic pain.   

Not disclosing is wrong if you are in a situation that can cause others harm. For instance, when getting on a plane, you shouldn’t be sitting in 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 activities you are able to do and plan accordingly. Remember, you can always reveal more information later as needed.