The Struggle to Feel Pretty with Chronic Illness and Chronic Pain

17 Aug

Two years ago, I went on the keto diet because a friend said it helped him feel less tired and more mentally sharp. Fatigue and cognitive impairment are my least favorite symptoms of my fibromyalgia. So I gave it a shot, and not only did I feel better, but I managed to drop the weight I gained since I got fibro, and more! I felt so good, so pretty!

See, upon onset of my fibro, I’d gained 10 to 15 pounds. My rheumatologist didn’t believe me when I told her it was the fibro. She dismissively said it was because I was getting older. Then she went on to prescribe me a medication for pain and pressured me to take it, even though my main complaint isn’t the pain. Remember? It’s the fatigue and brain fog. Yeah, guess what the side effects of that “pain” medicine were? That’s when I quit doctors.

I know for a fact fibro caused my weight gain. Many of these conditions we have cause weight gain, and it’s super frustrating and uncomfortable.

This afternoon, I weighed myself and saw I gained back every pound I’d lost in the past two years. That’s nearly 25 pounds.

Let me get to a few whys here.

I weighed myself because I can’t walk enough to get groceries and I’m hungry and I want to eat and thought if it’s under a certain number, I won’t hate myself for ordering a pizza. Also I’m depressed and want pizza. It wasn’t under the number. It was scarily over.

About a month ago, I returned from an epic road trip. I traveled the country for ten weeks with my senior dog. Kind of a last hurrah, making memories sort of thing. I put on a few pounds during the trip. I was four days in and invited to a cookout and there was pasta salad, so at that point, I just decided I’d eat what there was to eat. Free breakfasts at motels, locals inviting me for dinner, whatever.

When I returned, I got back on my regimen. I started working out again. But it didn’t last long. Aside from fibromyalgia, I also have osteoarthritis and degenerative disc disease. That all started to act up something fierce within days of my return.

I kept trying to exercise and be healthy, but a week ago, I woke up and something slipped into a terrible place of pain and pinched nerve. I could barely get out of bed. Still today, I can’t walk more than half a block.

Last week when this first happened, I ordered a pizza. I just wanted food delivered. Also, I dipped into my emergency stash of steroids. The next morning, I got a letter in the mail saying a letter about my medical benefits may have arrived late and I had extended time to appeal. That “late” letter was something that never arrived and a quick search online showed me my insurance had been canceled.

I’ve spent the past week working on that. Apparently a printer went offline in their offices, for two weeks, and no one noticed. They only communicate by mail. The first person I talked to told me I only needed to submit one document and all would be fixed. Go ahead and go to the doctor and have them bill it, he said.

I didn’t trust it. I called a few days later. A different person told me something entirely different. There was a different document that needed to be submitted. Why didn’t anyone tell me this? Because they only communicate via mail.

As much as I distrust doctors, due to the rheumatologist being terrible, I know I need one if I’m ever to regain the mobility I need for self-care, housekeeping, and earning my living.

Meanwhile I’m taking steroids and eating whatever my wonderful community drops off at my house because I can’t make it to the store or cook or even wash my dishes without crying.

I gained ten pounds just this week.

Of course, pain, stress, all if it triggered a fibromyalgia flare. Everything’s just getting worse.

I’m totally stressed because Monday and Tuesday (I leave in less than 2 days) I’ll be speaking at SUNY Cobleskill in New York, more than a four-hour drive away. It’ll be my fifth time speaking there. We’ve got a wonderful relationship. I’ll be doing a big program with a game show at the new student orientation, then presenting to faculty and staff the next morning. I can’t even stand for an hour, let alone make the walk in from the parking lot. But the show must go on. This is my livelihood.

Yet my biggest concern?? … What will I wear?

I gained so much weight. My IBS is flared up from all the foods I’m eating, so I’m super bloated. My clothes don’t fit.

I tried on a couple dresses and cried. Check out this pic of me presenting about a year and a half ago, and me today. Today is especially ugly because I haven’t showered, have been crying, and have a scratch on my chin because as I was floundering in bed to try to reposition myself despite all the pain, I gauged myself in the face with my own fingernail. You can totally see the IBS bloating, too. (And the mess on my floor because I can’t keep up with my house right now.)

then and now captioned

And I still want so badly to order a pizza because I’m SO. HUNGRY.

Here’s where all this lands. I’ve gained back 25 pounds. I do still have some clothes to fit and I’ve got a shaper thing to handle my bloated belly. I can shower and put on some makeup. Layers are good, even though it’s weird in summer. I’m certainly not obese. In fact, just three nights ago, I managed to make it out with a friend (an overly ambitious endeavor that led to me having to call a neighbor in the morning for an emergency dog walk because I was in so much pain I couldn’t get out of bed) and a stranger bought me a drink because he thought I was pretty.

The problem is being a woman – being a human – and comparing to what could be. Our society has so much struggle comparing ourselves to all the thin and perfect people on TV and in movies. Then we also have to pile on to that comparing ourselves to when we were at our supposed “best.” Whether it was when we were younger, or it was before we got our chronic illnesses.

I have fibromyalgia and chronic fatigue syndrome and irritable bowel syndrome and osteoarthritis and degenerative disc disease. Right now I can barely walk, and I don’t have access to medical care.

Acceptance is so hard for those of us with chronic illness and chronic pain. It’s nearly impossible to accept that we’ve got these conditions and will have them forever (in most cases). And it’s immensely difficult to accept our new self-images.

But here’s the truth I will tell myself, and I want to tell you, and let’s all try really hard to believe it. We are beautiful. We are warriors of hardships that all the “perfect” people shudder to think about. We get up each day and put on whatever clothes we can feel decent in and go to our jobs and tend to our families and do all the life stuff. We keep trying to be pretty, even when showering is so difficult and makeup feels useless. We keep trying. And this, right now, absolutely is us at our best. We’ve gone through so much and done so much to just be this, here, that it’s absolutely, stunningly beautiful. Our stories are beautiful. Our resilience is beautiful. Our bodies are beautiful. Our best is so freaking beautiful.

So be your best now, and love yourself for all you’ve done and do. See your beauty as a mighty warrior when you look in the mirror. Buy bigger pants if you have to, because beauty comes in all shapes and sizes and this is *your* shape. Let those who know your beauty hold you. Forget about who you ever were and who anybody else is and see what magnificence you are now, today.

You go work on that, and I’m going to order a pizza. I’m hungry.


7 thoughts on “The Struggle to Feel Pretty with Chronic Illness and Chronic Pain

  1. I have much the same sysmptoms that you describe and more. Inspiration? 20 years ago, with help from my GP, I got close to being symptom-free and felt that a radical cure was achievable. The GP retired and I have been unable to get other GPs to continue that treatment. Pls don’t give up hope of getting better: it is possible.

  2. This piece for me has been your best yet! Did I ever need to hear this today. I wish I could be there so we could push through this side by side together. For now, we shall have to settle for side by side apart. Love you!!

    • I’m so glad you like it! I was so strongly compelled to write this.

      Yeah, it would be fabulous if we were neighbors still, but side by side apart is pretty great, too. Love you too!

  3. This is actually something I actively worked on with my counselor earlier this year. I was lamenting not being able to wear heels anymore, the weight gain, the clothes I love the look of but can’t stand the feel of, etc. etc. She had me write my list of complaints on one side of the paper, and then write a rebuttal in the second column. So, I may not be able to wear heels anymore, but I can buy cute flats and still look nice. I don’t wear my suits to work anymore, but I still look nice and professional … and I can work better when I’m comfortable! That exercise has really helped!

  4. Pingback: I Was Surprised When this Common Question Triggered Me (how I discovered I'm a "Scrooge") - Christina Irene | Christina Irene

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