Sometimes, it’s only your doctor who understands

One thing that I feel is starting to really sink in, is that in many ways it’s starting to become only my doctor who understands what I’m going through…

Whenever someone suffers with a disease where you look healthy on the outside, it becomes very easy–too easy–for people to ‘pick’ on you about your shortcomings, and let’s face it–chronically ill people have a lot of shortcomings–and since we look healthy, people don’t feel like their conscience will bother them…

How sick can she really be?

Even in a case like mine–where there is a percentage of my records even experts could debate ‘was she really sick, or just faking it, or was just she having some kind of psychological breakdown?’ (Maybe 30%?)

But there are enough indisputable facts in my case, diseases I have tested positive for–MS, lupus, epilepsy (abnormal EEGs), cyclical neutropenia, polyps in various places they shouldn’t be, infections I’ve cultured positive for–that it is a scientific fact that I clearly suffer immensely.

But who looks at those facts?

Especially when you factor in jealously, or other destructive forces on your life?

Only my doctor.

The general public couldn’t even understand most of what’s been written in my records, let alone figure out how to interpret what’s going on.

Years ago, I read an article about chronically ill people feeling more and more close with their physicians over time, because as more time goes on, the fewer and fewer normal friends you have.

At the time, I was so hell bent on getting the answer, I never really digested what all that meant.

I can’t function without help. Some weeks I need more help than others, but when times are bad, it’s really bad, and I need help with almost everything, other than just walking around (which i can’t do for a very long time). When you’ve just had surgery, you think you can do much driving, or cooking, or cleaning, let alone think about things like bills or returning phone calls?

My life is an intricate web of support–the network of people who help keep me alive–

And I’m very grateful for them.

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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