I can relate to each and everyone of the above comments. I am 25 and feel 90. I tell my husband to be patient with his “90 year old wife”. I was sooo tired, we missed out on part of our honeymoon. It just shouldn’t be that way.

Autoimmune diseases are a hidden disability.

Since I look fairly young. healthy and “attractive”, I have had doctors ask me why I’m “at the doctor’s instead of on a date”. Once I rattle off my diseases, their jaws drop.

When I came in to have a TSH followup, one doctor (a fill-in) told me that my levels was probably “fine”, even though my thyroid levels swing wildly and suddenly, as they have for the past 15 years. He was all set to give me a prescription for XANAX, thinking I was a “typical hypochondriac woman”. When I told him I had Type 1 diabetes, he almost spit out his coffee. He then changed his mind, seemed to panic, and ordered a kidney screening to see if that may have been causing my symptoms.

In the end, as usual, the only thing wrong was my severely abnormal TSH. But the experience still ticks me right off.

I suffered slowly with undiagnosed Celiac for about 1.5 years. I was tired all of the time (sleeping 14 hrs per day), depressed, and having severe lows. My doctor said “You’re blonde, what’s the problem” meaning I *look* healthy.

Well, after developing “late stage” classical Celiac, and losing 15 LBS off my tiny frame in 3 weeks, losing my hair, having severe joint pain, lows, abnormal heart rhythms, dizziness,dark circles under my eyes, and other scary symptoms, I finally was able to get tested for Celiac after begging for the test.

My levels were off the charts, and I was diagnosed even without the biopsy based on those and my symptoms. I had the biopsy anyway. Virtually no intestines left. But I *looked* great, right?

It is really hard to explain to someone why you need a “sick” day when you look and sound “fine”.

Although I agree that it is hard for ANY autoimmune disease sufferer, I think it is especially bad for Type 1 diabetics. We get so many idiots proclaiming about how “diabetes” (Type 2) is a “manageable” and “controllable” disease if only you put in the effort. Yeah right. I can do everything “right”, and yet I still can’t be a pancreas, go figure.

I have been lucky, most people I know realize how serious MS or Lupus is, and how they can affect people’s energy.My aunt has MS. But they don’t seem to see that with diabetes.

Throughout the course of my normal workday, diabetes is always there, pinging like a sonar in the back of my mind. It’s a load I’d rather not shoulder, and something I cannot ignore. It chips away at my patience and makes life’s other little annoyances seem worse. Sometimes I wish my body would outwardly reflect the number of hours I spend achieving good control — I know my insides are benefiting, but it would be nice to have muscles or some other outward sign of all the WORK I am doing here!

Thank you, thank you for the pointer to the Spoon Theory article. As I burn the midnight oil (and tear through spoons for tomorrow) I’m truly grateful for Christine’s most valuable article and analogy.

Despite having type 1 for 35 years I’m still learning. And some days, like today, it’s a big lesson. Thanks again Amy.