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The Insanity of Invisible Illness

My chronic illness journey has spanned over thirteen months, the loss of roughly a million responsibilities and about a dozen different blood tests.  The worst number for me, however, is the amount of doctors and specialists I have had to seen within this time.  I’ve honestly lost count, but it’s got to be about 15.  Some of these people I sought out.  Some I fought to see.  One I had to leave behind, because he not only failed to help me get better, he actually made me worse.

I waited until January 2015 to see a doctor about my failing health.  I’m stubborn and I don’t like going to see doctors.  I tried to convince myself whatever was going on would just go away if I ignored it for long enough.  (Spoiler alert: it didn’t.)  So when I finally went to see my PCP I was pretty far gone.  It hurt to sit, stand, lay down.  I needed help getting dressed and climbing stairs.  I needed to bring Matt into every appointment just so that someone with a full brain would remember what was said for later.  Not only what was said but what was happening in my day to day life.  My symptoms had become a fuzzy mess in my mind and I had whole periods where I had to fight with my own brain to even get a simple phrase out of my mouth.  I forgot words often.  The pain was too bad for me to sleep through, and the fatigue and brain fog wouldn’t allow me to do much more than listen to audiobooks.  All of the blood tests–lyme, thyroid, viral–came back negative.

“Depression,” my doctor diagnosed.

Full disclosure: I have had active, clinical depression since I was 11 years old.  It is a condition I have felt a lot of shame towards for most of my life.  For a long time it ruled my life, but I couldn’t even admit to myself it was real.  I did not start regular talk therapy until college.  I refused to even consider medication until two years ago.  I have had deep, dark downward spirals that made me nearly impossible to be around.

My doctor knew all of this.  (Or at least, I had told him all of this.)  So when he thought my symptoms pointed to depression I felt…confused.  I went to a therapist weekly.  I was taking meds.  I honestly had never felt more control of myself.  It was a liberating, thrilling feeling.  I just needed to get healthy so I could enjoy it.

“Depression,” my doctor repeated after I said all of this.

None of my symptoms reflected anything I had ever experienced in my decade and a half of experience with my depression.  Even at my lowest, at my most damaged, I had never felt like this.

“Depression,” my doctor said again.  “It must just be manifesting differently.”

Feeling more confused than ever, I talked to my therapist about it.  She had been treating me for almost a year at that point, once a week.  She was very familiar with my condition, with my new symptoms and with my variety of issues.

“You’re doing better emotionally than I have ever seen you,” she told me.  “This isn’t how depression works at all.”

So I told my doctor what she had said.

“It’s depression,” he insisted.  “She and I will just have to agree to disagree.”

So I went back to my therapist.  I was exhausted, in pain and trying to figure out how this was all in my head.  There had been multiple instances where Matt had had to physically carry me up the stairs I was so weak.  Desperate for something I asked my therapist to think and research, to see if any mental illness could manifest itself this way.

“Not like this,” she said.  “Not that’s been recorded in an emotionally stable person like you.”

She offered to talk to my doctor, if he wanted to hear it from her.  I went back and asked if we could get an MRI (I have a history of MS in my family).

“It’s depression, there’s no point.”  He did not want to talk to my therapist.

We had to push and push and push before he would order the MRI.  It showed I had a healthy, 25 year-old brain.

“See?” the doctor said.  “Depression.”

I was in desperate pain, and I was starting to grow depressed.  Depression is a common side effect of a bedridden, constantly aching person.  But when I pointed this out my doctor just said my emotional dip proved his thoughts correct.

We began to do our own research.  I started acupuncture and it helped a lot–suddenly I was back to a more normal brain function, and able to move better.  My doctor dismissed this.  We had to talk him into considering alternate ideas.  When he finally gave me the fibromyalgia pressure point test, he was openly surprised that I was sore in so many of the right spots.

“Maybe you have fibromyalgia,” he hedged.  “I still think it’s depression.”  He referred us to a rheumatologist.  Finally.

This all took months.  Months of pain, of frustration, of feeling like I must be crazy.  A professional, a person with so much education, a person who had to know better than we did kept telling me that everything I was experiencing was all in my head.  When upping my meds made no difference, his opinion did not change.  When my therapist disagreed, his opinion did not change.  I felt more insane and unbalanced than I ever have in my life.  My lived experiences, my daily life, wasn’t supposed to be possible.  According to the expert.  I had to be crazy.

In his defense, my PCP never used the word “crazy”.  He just told me I was wrong about everything I was experiencing, about my own experiences with depression.

No one else thought it was depression.  Not a single specialist or expert we visited even brought it up.  We changed doctors and my new PCP is wonderful.  But I got a lot worse before I got better.  This past week my rheumatologist finally officially gave me the fibromyalgia diagnosis.  Stress is a known trigger for fibromyalgia flares, and this man gave me the worst case of stress I have ever had, at a point where I felt more ill than I ever have.

My experiences are shockingly common.  Many, many people with fibromyalgia are told by their doctors that everything they are experiencing is all in their head.  (This is a great article about it.)  And then there’s the reality of living with an invisible illness–I had no idea how to tell people I was sick.  I didn’t look sick, except to people who knew me very very well.  For over a year I had no formal diagnosis.  I felt a lot of guilt about feeling too tired, too pained to participate in all of the things I was committed to.  I had to drop out of teaching adult education, teaching sunday school, helping to lead two workshops and a whole host of other responsibilities.  I cut back and then ultimately lost my job because supervisors were frustrated that I wasn’t getting better.  Friends I had once seen weekly I did not speak to for months.  Matt spent all of his free time taking care of me, and I couldn’t do chores or cook or help out with anything like I used to.  I felt a lot of guilt around all of this.

This week is apparently Invisible Illness Awareness Week.  People with invisible illnesses–be they a mental illness like depression or a physical illness like fibromyalgia–struggle to explain them to others.  People without invisible illnesses struggle to understand.  (I feel like I know this better than many because I have lived on both sides.)  I’ve written some about my own illnesses over time because I think talking about them helps to take away the stigmas attached–that mentally ill people are “crazy”, that illnesses you can’t see don’t exist or aren’t that bad.  I answer any and all questions about my experiences to anyone who asks (and to a few who don’t) because for me, openness is important.  I want to normalize my experiences.  I hope that, in some small way, doing so might help other people.

One thought on “The Insanity of Invisible Illness”

  1. Thank you for sharing. I 100% agree with you and truly appreciate your honesty. No one should have to go through what you did, particularly from a doctor that we put our trust in.

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