Recently I wondered about how many doctor appointments I had last year. Since I have a personal policy of chasing down all idle curiosities I pulled out last year’s planner. 51. I even left out a few lab only appointments, but balls! 51!

When people think about how chronic illness can eat up a person’s time they tend to think about time the person spends sick – in a flare up, or hospitalized – but even when one is doing well, it takes a lot of darn time to manage and maintain your life.

I choose the word, “life” deliberately. It’s not your, “health,” as we are often predisposed to say, but your life.

Even though I knew I had a lot of appointments, especially last year with the severe anemia issues, I did not expect that many appointments.

Some of those appointments were short at 10-15 minutes in an office, but still, after driving there and back, that can be over an hour and use significant amounts of your limited energy. If you have to stay for labs, or go to the pharmacy after that is even more time. Some of those appointments were 1-2 hours, and about 10 were over 4 hrs.

Maintaining your life with chronic illness is the equivalent of a part time job.

I share this not to garner sympathy – my life is pretty fantastic. I have wonderful friends, pups, and I can RUN. Maybe I can’t do anything consistently and I’ll never be wealthy, but what I can do and have is amazeballs. I do share this to help people perhaps gain empathy or understanding for their friends and family with disabilities and chronic illness.

There is a school of thought that believes that people often believe the best of strangers and the worst in those they know personally. I’ve seen it happen often. People are overwhelmed with understanding for strangers, but think the worst of family and friends. I think it’s some sort of cognitive disconnect or blind spot. They’ve seen us at our best, and seem to take that as representative of our abilities. I’ve googled to find out where this thought comes from, and I have been unable to find it, if you do or can source it please let me know!

This blog and my online activism has connected me with many other people with disabilities/are disabled, with chronic illness, or spoonies. I’ve found this to be a common thread among them. It’s especially painful to have family or friends downplay or disbelieve you while ascribing every benefit of every doubt to a perfect stranger’s story. It’s a complicated state of affairs that I have yet to clarify and resolve myself, but give it a ponder. Is there someone you know personally that you disbelieve, render doubt towards, or play down their pain? If so, why? Give it a think.

We think all the time, and give up our precious spoons, and our good days and hours to doctors and doctor’s offices. Needles and pain just to keep living our lives at the state you see.

My running is just an example. If you can run, you can work. The issue has never been that I can’t do anything. It’s that I can’t do anything consistently. Also, 45 – 60 minutes does not 8 hrs make. Just this month I have had 4 appointments to allow me to continue to run, because I love it. It might be all I do, but I enjoy the hell out of it. I want the only thing I get to do some days to be something I love. I don’t think that is too much to ask in this life.

It’s another prong of living life disabled. Constantly having to justify anything fun or exciting you do. If you can THIS, then you can THAT. Excuse me while I stop justifying my right to enjoy the life I have been given – I have to go to another appointment.