illness

Too Much Information: 10 Unexpected Symptoms of My Illness That it’s Taboo to Talk About {Part 2}


{See page 1 of this list here.}


4.5. Weight (continuation of 4. Food)

People who are not overweight don’t realize what a stigma is attached to it.

People avoid eye contact.

They don’t take me seriously.

They scoff at me.

They roll their eyes.

I’ve even heard whispered comments about going to McDonald’s too much.

I wouldn’t dream of going to McDonald’s unless I actually wanted to be hospitalized.

The truth is, I eat healthier than almost anyone I know.

I have pushed myself to excersize until I nearly passed out and still gained weight.

I have had diet restrictions that nightmares are made of.

So, when someone, usually someone very petite and healthy, gives me that judgmental look, I just smile.

She doesn’t know my story.

She doesn’t know I’ve lost over 50 pounds already.

She doesn’t know that I can finally walk again.

She doesn’t know how incredibly sick I have been.

She doesn’t know the truth about overweight people: that most of us have undiagnosed and misunderstood health problems.

An interesting part of being overweight is being judged by other Christians for being gluttonous.

It’s important to note that the most gluttonous people I know are the ones who don’t gain weight easily. They know they can eat whatever they want without repercussions, so they indulge.

Overweight does not automatically mean gluttonous.

In fact, in my experience, that’s pretty rare.

Those of us with weight problems are far less likely to do that. We’re usually extremely more careful.

Unless, of course, we’ve just given up because nothing seems to help anyway.


5. Pain

I never knew I could hurt like this.

I’ve hurt in places I didn’t even know existed before I got sick.

I’ve hurt so bad I wept.

I’ve hurt so bad I prayed that I’d die.

I’ve had recurring deep-muscle-and-bone pain that lasted months, and I’ve had random intense pain that lasted a night never to return.

I saw a man from my childhood at a homeschool function. He and I sang together in the teen choir when we were young.

He asked if I still sang solos. I explained that it hurt too much to sing.

He inquired, puzzled, how singing could hurt.

I replied that I didn’t know how.

I just knew it did.

Not long before that, I had spent the entire Christmas church service crying because all I wanted to do was sing about my Savior’s birth with everyone else, but I couldn’t because it hurt too much.

There’s nothing more humiliating than being in so much pain you can’t even reach to wipe your own bum.

Sometimes, I couldn’t even dress myself.

For about a year, I couldn’t put on my own shoes, and my teen did it for me without a single complaint.

I’m thankful I found Low Dose Naltrexone, a medication that took nearly all my pain away.


6. Brain fog

I’ve always had word retrieval problems, even as a child. Words like sleeping bag and suitcase were interchangeable when I was a kid because I would always call them by the wrong name.

What surprised me was when I got the the point that I couldn’t read more than a paragraph. Following thoughts over multiple paragraphs were lost on me and I couldn’t connect the dots of ideas over a whole page of information. I had lost the ability to follow a train of logical thought.

For a while, I couldn’t even do basic math.

It was very frustrating trying to read out loud with my boys. For a while, I stopped being able to bring words into my brain through my eyes and put those words out my mouth in words: I couldn’t read out loud. It simply wasn’t possible.

When I could stare at a blank wall and my brain (which is normally brimming with a billion busy, crazy ideas) was just as empty as the wall, that was upsetting.

Thankfully, these problems come and go, and some have gotten better with treatment.


7. Jewelry

I haven’t been able to wear necklaces for years largely due to the everything-feels-too-tight claustrophobia.

Nothing can be on my neck, not even a scarf.

Recently, I’ve had to stop wearing even earrings.

Basically anywhere that metal contacts my body, even for an hour or two, I will break out in a rash.

I used to put my hair in a barrett, but I’ve been braiding it instead.

It’s not a big deal. Lots of people choose not to wear jewelry, but if you can’t wear makeup, jewelry at least is something you can wear.

Now, I can’t wear either.

I do have a few necklaces that hang from a ribbon or corded chains. I’m glad I can still wear those. They make me feel almost human.

Every once in awhile, I decide it’s worth it. I’ll just deal with the rash that results from the metal.


8.Time management

I basically have none.

You can’t control how you spend your time if you never know what you’ll be able to do.

Time management assumes that you’ll be able to do what you plan when you plan it.

I have no such luxury.

I’m at the complete mercy of my brain and body.

Whatever I’m able to physically and mentally do, that’s what gets done.

I don’t like it.

In fact, most of the time I hate it.

But, it is my reality.


9. Shaving

I didn’t expect to have so much problems with this.

First of all, I have to shave parts of my face. The thyroid disorder caused a hormone imbalance. Now, I have patches of facial hair.

I can’t use any shaving cream because I react to everything.

That’s not really something women talk about. They certainly don’t admit it.

I can’t shave my arms and legs like a normal woman would. No matter what method or product I use I break out in painful rashes on my body anywhere I shave.

I actually break out on my face too, but I’m not willing to have facial hair. So, I suffer through it.

If you see unshaven legs peeking out from under my long flowing skirt, you’ll know why.


10. Death

I started planning for my death when I was 32 years old.

I’m not talking about getting a will and life insurance and that sort of thing like most responsible people do.

I’m talking about having conversations with my children about things I want them to know if I die.

I’m talking about weeping because I might not be here to see my children marry, to meet my grandchildren, or to grow old with my husband.

I’m talking about discussing with my mom about our finances and where to get the information the family will need if I’m no longer here to pay bills.

I’m talking about mentally preparing myself, because I might not see my next birthday.

I’m talking about telling my husband I love him multiple times every day to make sure he knows and to make up for those years I might not be here to say it.

I’m talking about being keenly aware that my days are numbered.

Most people in their early 30s are still acting like they are invincible and will live forever, not planning their own funeral.

I’ve had friends and acquaintances who’ve died young from autoimmune complications.

I’m actually doing better overall than I was when I was 32.

I might even see my 40th birthday.

I could maybe even live to be old.

One of my very sweet friends has forbidden me from dying. So, I’m pretty sure that means I can’t until she says so. 

I’m happy for each year that passes.

I’m happier to get older because that means I haven’t left my family without a wife and mother.

Even these gray hairs don’t bother me.

I’ve earned them.


So, why tell you all this?

Some of that is personal and detailed.

Why bring it up?

If you’re sick like I am, I want you to know you’re not alone. Just because it’s not socially acceptable to talk about this stuff doesn’t make it cease to exist.

I acknowledge your struggle.

Like mine, I’m sure your illness is deeply painful and profoundly impacting your life in ways that you feel you can’t tell anyone.

No one wants to hear about blood and body fluids and dying, right?

I know. I’ve been there.

Just because no one knows doesn’t mean it isn’t significant. 

Your struggle is real. 

I hope you can find at least one person who you can be honest with about how incredibly horrible it is to live with these illnesses.

It makes a huge difference just to have someone safe to talk to.

All it takes is one person.

If all this is new and shocking to you, if you don’t live with illness and you’re in awe that others deal with this stuff, please know that there are hurting people all around you.

Approximately half of the population deals with chronic health conditions.

If you have a friend who is sick, chances are, they are telling you only a very small portion of what’s really going on.

Be the friend who can listen and offer support without judging or acting appalled.

All it takes is one person.

I’m seeing a lot of improvement, thankfully, under my new doctor, but these things come and go like the waxing and waning of the moon. I’ve braced myself for what seems like the inevitability of getting sicker again.

I have amazingly supportive friends and family who are there when I need them.

In the meantime, I’m trying to enjoy my mostly-pain-free, mostly-brainfog-free, higher-energy existence and using this time to try to encourage others.

For as long as I’m here and as long as it lasts.


Blessings,

Sarah

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