Why I Understand When People Don't Believe I'm Sick


Dear family, friends, acquaintances, and passers-by with health advice,

There are some of you who don’t believe that I am sick. That I’m faking my health issues. That I just want attention. I understand your skepticism. For decades the medical community told you I was fine, and you believed them because they were the professionals. You’d heard stories about people who couldn’t get attention any other way so they became hypochondriacs, and assumed that was me.

It used to be important to me that I prove to you that you wrong. Now I am confident in who I am, and I no longer need outside approval. Honestly, sometimes though, it just still bothers me. So I got to thinking, how can people close to me and who love me not understand the agony I am going through most days with all of my chronic medical conditions?

Because…

I am a miracle of science!

I take three medicines before I get out of bed in the morning:

  • One medicine for my neuropathy pain
  • One medicine for my muscle pain (myopathy)
  • One medicine keeping the asthma at bay so I don’t stop breathing (asthma)

After breakfast I take four to five more things:

  • One medicine to keep my muscles working. Just. A. Little. Bit. Longer.
  • A little something to help my belly feel better, it’s been through a lot with IV treatments
  • Vitamin D (no one knows why I continually have a vitamin D deficiency)
  • Vitamin B complex supplement for energy and to keep those Bs up
  • Sometimes during the day, I need to use my rescue inhaler for my asthma, so my lungs will keep going and I can stay out of the hospital. I’ve spent many weeks in there (and a bit in the ICU) when I couldn’t breathe and that’s no fun at all!

At night there are seven to eight more medicines:

  • One to keep my nerve pain at bay while I sleep
  • Two that keep me from having intense muscle spasms
  • That same one again that keeps my muscles working. Just. A. Little. Bit. Longer
  • The medicine that’s helping my airway remain open so I don’t stop breathing
  • One to help me relax and sleep after the struggle to keep this body going one more day
  • One to reduce my allergy symptoms so I can breathe better and not have as many sinus problems
  • After all of these, if I’m still having problems, the doctors recommend Tylenol. They wouldn’t want me to take something stronger. But that’s a discussion for another day.

Then I hook up to the CPAP machine so I don’t stop breathing any more at night.  Who knew I stopped breathing up to 20 times an hour? I didn’t before the sleep
study.

I understand now: You are seeing this miracle of modern medicine that is my body functioning, through the pharmaceutical symphony of my medicinal routine. Of course, if I ran out of these medicines, you’d see how I feel before I take them and as they wear off, and you’d see my breathing and strength slowly ebb away, but I’m great at putting on my strong face and marching through. Except when I’m not, and then I’m in bed where you can’t see me.

I finally see the “me” you see. She is quite the little dynamo! A homeschooling mom with seven children ages 5 to 27, a wife, a blogger, an entrepreneur. That sure sounds like a healthy person at face value! Thank you for showing me how well these medicines work (over $250 per month, and I have insurance!). From now on I promise that I (mostly) won’t get frustrated with your lack of understanding, and maybe after reading this, you’ll understand me a little better, too.

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Lead photo by Thinkstock Images


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