I'm here to walk you through the life of person living with chronic pain and/or autoimmune issues. I will warn you I am feeling a little angry and sad today.
You've been warned.
About three weeks ago, I had an appointment with a new pain specialist. It's safe to say I've been struggling with health issues longer than he had been practicing medicine. Regardless, I tried to be open minded with the new guy, and not let my mind think the worst.
The past fifteen years, I've encountered many a doctor, family and extended family members, and friends that had a limited view on what it means to be in chronic pain and have autoimmune conditions.
Surgeons and specialists can be a particularly tricky bunch, when they don't have experience dealing with your ailments, surgeries, and pain. I've internalized a lot of the hurtful comments and opinions all these years, and tend to surface when meeting a new doctor, or someone is asking a whole lot of questions.Now that I'm aware this, however, I remind myself, "This person is just coming from their point of view, experiences, health, cultural and societal beliefs, and is not meaning to be hurtful. Check yourself."
Lately, (and especially this last year) it has been very stressful, and I have been taking more to heart than I need to. WHICH IS NONE.
Most of the time, when they are coming from ignorance, and a general lack of understanding, I can be like:
and let the person share their opinion on, say, Fibromyalgia or Chronic Fatigue Syndrome (both which I was diagnosed with).
It doesn't help to get all heated, when faced with someone that doesn't understand what you and your body is going through. I think more than anything, I look for empathy in a doctor/friend/significant other. Honesty is number two.
When a doctor/friend/idiot says things like, "I've never heard of period cramps being so bad. Maybe you just have a really low pain tolerance."
And it's particularly annoying when a MALE doctor tells me just to ignore the mind-numbing, fetal position, every*part*of*my*body*hurts*SO*DONT*TOUCH*ME-type cramps,while advising to just get pregnant, then it will stop.
Oh, but the particular doctor didn't discuss it with me. Only with my ex-boyfriend. While I sat at the same table.
No, really.
Besides that pregnancy is NOT a cure for Stage IV Endometriosis, it is and should be MY decision whether to even try or not. I am the one dealing with the pain, yes?
Okay.
Also, I am a person, not a 50's fictional Stepford wife.
Please acknowledge me.
To his credit, though, my ex was upset and fully supported my choices regarding my health. He knew it wouldn't improve my symptoms, nor 'cure' endometriosis.
It can be a really frustrating thing; that basically you have to educate these doctors stuck in the 1960's, friends, family, or partners that don't understand why you suddenly cancel plans, or leave early.
*OR*
People can be particularly hurtful and clueless, saying how much better they would handle it than I. ''Just ignore the pain, it's that simple," they say.
"There's no way it could have lasted this long."
"Wait, didn't you have that hysterectomy??" (said with disbelief/anger/confusion) "I don't understand why you still are having pain!!"
"Don't you want to have a family, and kids? I had (symptoms X), and I just ate better, and it went away."
Because I certainly DID NOT.
No way did I choose this. I had lots of things planned.
Since she said it, it can get very lonely when you are literally too tired and in too much pain to get dressed.
Or you do, and are in too much pain after to ride/drive in the car.
Or too tired or the spasms are too intense to even carry on a conversation.
I can be lonely when you are in a room full of family, and you are in too much pain to speak, and you just manage a half smile.
"Everybody gets tired; maybe you're just not trying hard enough."
That's not really how it works, but thanks for weighing in.
Some have a complete wall; a lack of empathy to someone who struggles day to day with sometimes crippling pain.
It's especially disparaging when it is your Doogie Howser doctor.
Sigh.
I admit sometimes I let their ignorance linger in the back of my head. The comments of me just being 'lazy', or I can't be in as much pain as I say, and still function.
If I could just work harder to forget it, and work through it, etc. Many times I can keep the attitude that their experiences, beliefs, faith, family, etc stops them from fully understanding my situation.
Inside, I am:
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Especially, when I'm already having a high pain day.
And here you might be like:
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Well, let me tell you.
If you know and love someone suffering with any of the issues I do, or the myriad of other chronic ailments, education is the key.
Compassion. Understanding. Offer to help around the house/with the kids/shopping.
OH, GOD THE SHOPPING.
Please do all the shopping, and I will pay you.
Send a text, or pick up the phone for a few minutes.
Let us know you didn't forget about us. That just because we missed the last two dinners, doesn't mean you love us any less.
Above all: For me, anyway, all I want is for someone to actually listen.
Even if you don't have a solution. Even if you cannot fathom how I feel.
In fact, the most helpful for me is when someone says,
"I'm really sorry you are having such a bad flare. I'm hear to listen, and hold your hand, if you wish.
I'm here for you."
