I would help them understand Myositis. With Myositis day just happening in the past, I decided to educate my family and friends about Myositis. That has helped some. Instead of saying "I can't do that, I say "I'm unable to do that" or "I am unable walk that far" or "I am fatigued and unable to join you". I found removing the "can't" invokes a different emotion.

Really your well being is up to you. It is no one else's business to push you past your limits. I know it is hard to speak up but no one wants to see you in bed for 3 days.

I hope you are able to find your limits and share them so you can feel the best you can. Hopefully someone else might have some resources to help you get there.

Hi Freelee. You are not alone in this and we all understand how difficult it is. I usually say ' I can't manage that '. I am sure friends and family just believe I am difficult at times. It's hard. This disease takes so much from us that people never see. Autumm

Hi freelee - I agree, it is really hard when you look OK - friends say "Oh, are you still on steroids after all this time?" They cannot understand that even by going down half a mg can cause a possible flare. It has taken me 1 1/2 years to get to 7mg steroid and I am still tapering. All I can suggest is print off some information about DM/PM and give it to your friends and family - perhaps that may help. We are good at not showing pain - perhaps it is time you showed it??

Hi Freelee, We all share your frustrations about people passing judgment on what they perceive to be our abilities and disabilities. Many an interesting novel has been written on the perceptions of people too.

I will often have a conversation with my doctor on what I should be able to do at this point. Recently, my doctor agreed with me that a part-time job would be a great idea. My health has improved, but I still feel sick sometimes and very tired in the afternoons. My doctor thinks my medication does not need adjustments at this point. I am taking more vitamin C, B12, and calcium which has helped to feel better. I also know what to expect with my disease down the road which is helpful.

The Myositis Association website at www.myositis.org is a great resource on DM/PM/IBM.

I wish you well in communicating to your family. Talk with the doctor and find where you are at this point. Let the doctor know how you feel.

Best Wishes.

Thank you all, you are so kind. it is just wonderful to have a group of people I know that understand what I am going through. Thanks again