Me? Responsible?

I'm curious as to what patients with a chronic illness think their role and responsibilites are .... ???

I was told early on by a rheumatologist, that I don't complain enough.  I realized that I might not get the care that I needed, if I didn't.  This was one sentence, spoken by one person, that I'm positive, has affected my treatment over the last year.  This was a difficult thing to learn how to do, we are raised by our parents to NOT to complain, so it is not something our internal voice allows.

I've learned that I have to be responsible for seeking out the best team I can.  The best team for me, at whatever stage I am at in my disease.

I've learned that I need to be informed about every aspect of my disease and treatment, and I am allowed to ask WHY?  HOW COME?  HOW LONG? WHAT CAN I EXPECT?  Any caregiver that gives you a difficult time about asking questions - needs to be replaced, they are not earning their spot on your team.

I've learned that reaching out is never wrong - to your family, to your friends, to your team, to your insurance company, or your government, to your online community.

Utilize every resource you can find that works for you, different resources have different "tones", so find ones that ring true for you.

Be responsible for managing your pain, it's not your fault that you have it, but you are accountable for what you do about it.  Reach out .....

Educate ... your support system members and your friends.  I'm sure alot of us didn't know anything about our disease until we were diagnosed, so don't fault others for not knowing.  Spoon feed them information if you have to .... or don't, if you don't want to, but don't blame them for not knowing. ... The more we educate, the better for everyone in our community.  Some people in your life will seek out information (yay!, this surprised me) but most won't.

It would be great to hear from you if you have more to add to this post!

The Imaginary Friend