Can I tell you somethings that are hard to say so I wrote it down?

1. Doctors / Specialists act like they know how we are feeling better than we do.

2. People who have no idea what our illness is or what we are going through, will give advice about what we should be doing.

3. Put 10 Autoimmune people in a room with the same disease and you will have 10 different people in a room with different symptoms.

4. When someone says “I don’t know how you manage…” we don’t know either!

5. Just when you think you can’t take anymore… you do

6. We always forget that we are not going through these things alone, it affects everyone in the family / relationship and so everyone needs consideration.

7. Able bodied people think that putting in a handrail makes a place ‘disability friendly’.  It isn’t!

8. People forget that doing ‘something fun’ is challenging and takes a lot out of us. There is a price to pay for even the stuff I enjoy doing. Like blogging! 🙂

9. Most of our money goes on medicine so we sometimes don’t buy what we need for reasons like… little things like bills! It’s exactly the same time my doctor will ask me “how are you going with that med?” and I tell them something like “Not sure… too early yet”. I have draws of scripts that I cant buy sometimes!

10.  Only reasonably healthy people can manage waiting room offices. Most of us cant because of pain and various other reasons. So the options are usually stay at home and put up with it or drive to ER. I stay at home because I hate sitting in ER’s. Hence 10 yrs Autoimmune = 1 ER visit.

11. Most patients with Autoimmune diseases know more about the disease than the specialists. We have to. We have no choice. We can’t afford to wait for a doctor to learn how to best manage our symptoms!

12. We are so used to feeling bad and in pain that we don’t know whether we are actually dying or its just another normal day. I have resigned myself to dying at home because I don’t know what is considered ‘extreme pain’ anymore. That’s situation normal to me. And at least the view is better.

13. It takes a lot of courage to be in a wheelchair, scooter, zimmer frame, diaper, so please remember that when you see us in one.

14. 99% of the symptoms you can get with Autoimmune are either extremely embarrassing, strange or extremely painful so sometimes we might not tell anyone what’s happening.

15. It takes me 2 – 3 hours each morning to get ready. Yes, you read that correctly. 2 – 3 hours. Most of that is preparing myself for moving enough to shower and dress. So never ask a Severe Autoimmune to be somewhere before 9 am; Ever.

16. There is a whole spectrum of severity with Autoimmune diseases from ‘high functioning’ to ‘severe / debilitating’, don’t assume that because you ‘know someone with MS, RA, Addisons or Hashimoto’s that you know what everyone is like. We are all different. Its like the Autism scale or the Asthma scale.

17. There really is no cure yet… I am not making that up! – Regardless of what your naturopath, or anyone else, might have told you. But as soon as they find it, we are going to be lining up for it!!!! There are over 28 million in America alone.

18. No, I haven’t given up on life… far from it… I work harder to have one!

19. Most of us under use pain meds because we are scared of becoming addicted… not the other way around. Besides pain meds make up less the 10% of my overall daily medications… the rest are meds to try and stop the spread and disease activity.

20. Being in pain (and missing out on the normal everyday life events) can and will make me depressed from time to time. Not the other way around. Just because I don’t show you my tears, doesn’t mean that I don’t cry everyday. If we didn’t cry it would just keep building up. Sometimes a good cry is the best way of wiping the slate and getting ready for the next day.

21. Yep. Sometimes we can get jealous of those who are ‘high functioning’ – doesn’t mean we are bad people or I would want to take away their level of health. Yep. Sometimes I am jealous of all the stuff that able bodied people can do (and take for granted), I just wont ever tell you.

22. Just because our lives changed completely, doesn’t mean our personalities did. If we were smart, funny, loving, caring, impatient, bossy, quiet, introverted, intellectual etc before we got sick, chances are we still are.

Gentle hugs,

Trish