@maryalicep

I'd like to add my welcome to that of @johnbishop. I'm glad that you posted on Mayo Clinic Connect. I sense that you have a problem with the acceptance of your husband and others regarding your health condition. That is easy to understand, especially if you have a rare disorder.

I have a rare form of cancer and in spite of three surgeries, I really look healthy. I've been to support groups where others have this form of cancer, often with liver or lung metastasis, and we all look healthy and great. I understand that is one of those complications that can be hard to live with. I would suggest in order to deal with this problem you might begin to educate those who are closest to you about what this disorder really is. Perhaps you could print off the information in the links that @johnbishop gave and leave them for your spouse or other close family/friends to read. In this way, they can see a little of what you are dealing with from a scientific/medical standpoint.

When you have a chronic illness exercise is still important but the type and duration often need to change in order to avoid pain and injury. You might try tempering your exercise pattern so that it helps, but doesn't hurt. For example, you might try regular walking instead of power walking or an exercise bike (that has little to no impact) rather than high impact exercises. It takes time to adjust to a chronic illness and it is disappointing not to be able to do what used to be so enjoyable, but it is definitely worth the effort.

Does this sound helpful to you?