I asked my husband if he wouldn't mind sharing his experience what it is like sharing life with someone with an invisible illness and sharing some advice for others in his same position.
-How does having a wife with an invisible illness affect you?
"It affects me in how it affects you (Kelly) or frustrates you (Kelly) that people do not see."
-What is your advice for caregivers of people with invisible illnesses?
"Have patience and endurance and take care of yourself."
-What do you mean by "take care of yourself"?
"You need to realize that you do need time for yourself. You need to do whatever it is for you that rejuvenates you. Recharge, de-stress and do what you can to make time for those activities. There are sometimes when you aren't able to take time for yourself. But, you have to try to find a way to fit it in. If you let yourself get to a point where you are running on empty, you don't have reserves for when it gets tougher. You need to be prepared for the times when it takes endurance."
-What are some examples of things that rejuvinate you?
"Volunteering at food pantry. Going to church. Lying on the couch and watching tv. Getting into my interests and having fun with that."
-What is your advice for other caregivers who come in contact with those who do not understand invisible illness?
"Especially for invisible illness, just remember that people probably are not going to understand, at least not right away. Patiently explain when they don't. They may care, but don't understand. It is easy to recognize when someone is in a wheelchair that a person is suffering because it is visible. Sometimes, I will tell people you (Kelly) are doing bad again and they will say "But she looked so good when I saw her." I tell them "she looked good, but she was toughing it out." Say things that let them know they may not be able to see the pain. Just be honest that yeah, you often can't see when she is suffering. Explain it plain and simply."
Special thanks to my husband, George, for this interview.