You can choose to say no, but I can’t choose to say yes

October 22, 2015

“I have to do this and this and this and this and then there’s that trip tomorrow…. I mean, it’s fun, but it’s still a lot, you know?”

All I could do was nod my head. What could I say? I remember what it was like to be so busy and feel like I couldn’t keep up, but my friend was talking about how he was so busy, that tomorrow’s day trip would be overwhelming. The day trip that he and other friends of ours take every year. The day trip that I want to go on every year. The day trip that I miss every year because of my health problems. The day trip that he could say no to, but chose not to.

That was the hard part for me. I just kept thinking, “You could always say no.” I remember being in that place, and feeling like I couldn’t say no to things. Now I see what a luxury it is to have the choice! Because even when it’s something you really want to do, you can always say no. But you can’t always say yes. At least, I can’t always say yes.

There’s a certain perspective you gain when your body is constantly stopping you from doing things you want to do, things that your peers can do effortlessly. I wish I could explain it to my friends. I see things so differently now. It’s not necessarily better, and the cause for it totally sucks, but it’s different.

It’s easy to say what I would do in the same situation, but the truth is, there’s no way to know. Maybe it’s be just as over-committed as everyone else seems to be. All I know is that right now, I sure wish I had the luxury of choosing to say yes to invitations. I just hope everyone else remembers they have the option of saying no.

2 Comments | Decisions, Expectations, Fatigue, Frustration, Insensitive, Isolation, Limitations, Pain, Rants, Relationships: Family & Friends & Dating & Sex, Symptoms | Tagged: , | Permalink
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Cutting out the people who don’t care

October 13, 2015

Her: I’d like to invite you to our house for Thanksgiving.

Me: You’ve probably heard that I might need surgery, so I can’t plan anything until that’s figured out.

Her: I’m sorry to hear about the surgery. I had no idea. Just let me know if you’ll be able to make it or not.

On its face, this seemed ok. She was sorry to hear about the surgery. So that was a good response, right? But I felt like something was missing. It nagged at me. I read the message again. Something still nagged at me, but I didn’t know what.

Hours later, it hit me: she didn’t ask why I needed surgery, if it was a big deal, or anything else!

I’ve been one of the lucky ones. Most of my family and friends have been incredibly supportive. A lot of people lose many of their loved ones when they have a chronic illness. It’s an unfortunate side effect that the doctors don’t tell us about. It’s hard and it hurts and it sucks. But it happens.

For me, it was my sister. I’m sure our problems aren’t all because of my health, but they’re a big part of it. Every now and then, I question if things area really that bad. Maybe I should try to make amends? Maybe she really does care? And then something like this happens.

Apparently our parents hadn’t mentioned my possible surgery to her. I guess there wasn’t anything to mention yet. I was pretty sure I’d need surgery, but I hadn’t gotten the MRI results yet (which is why I haven’t mentioned it to you yet – don’t worry, I’ll tell you all about it when it’s official.) Now, if someone I cared about had said, “As you probably know, I might need surgery,” I’d be upset and worried! I’d ask why, when, if I could do anything to help, etc. Actually, that’s how the few friends I told have responded. They’ve been amazing. They’ve been calling and texting and emailing. They’ve asked questions and offered support. Not my sister. Nope. She didn’t even ask why I would need surgery.

It’s hard to accept that sometimes a relationship can’t be salvaged. It’s natural to want to keep people in our lives. It’s especially hard when that relationship isn’t a vague acquaintance or a coworker, but a close friend or a sibling. We don’t have any other siblings. We only have each other. But that doesn’t matter. That’s not enough of a reason to try to be close to someone who obviously doesn’t care about me, or who at the very least tries to distance herself from me.

I know from past experience that I am better off focusing on the positive relationships in my life. So I will go to Thanksgiving dinner to be with other relatives (depending on how I’m feeling,) but until that day, I will put my limited energy into relationships with the people who love me and care about me.

Now if you’ll excuse me, I need to answer some more of my friends’ emails. They’re worried about me.

6 Comments | Decisions, Expectations, Frustration, Insensitive, Rants, Relationships: Family & Friends & Dating & Sex, Support | Tagged: , , , | Permalink
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Learning it’s ok to cry

September 11, 2015

A couple years ago I wrote about the fact that I don’t cry much about my health situation but I wasn’t sure why. By contrast, I know exactly why I don’t cry from the pain itself, and that’s because it started when I was a kid, and I learned fast that the adults in my life thought that I was just trying to get attention. If I cried, they thought that even more. So I didn’t cry.

Fast forward to my 30s, and I still don’t usually cry from pain, frustration, or fear. I cry for other reasons – a sad book, the death of a loved one, and such and elicit tears, even though health issues rarely do.

In the last year, though, I’ve been making more of an effort to let myself cry when I want to. It’s cathartic, so why not? I do so much to try and help my health, both physical and mental, so shouldn’t I be willing to cry?

I started with simple things: I didn’t try to stop myself a few weeks ago when I was reading a sad scene in a book. Before, I would try to hold back the tears and fail; this time I didn’t try to hold them back. I let a few tears escape when I was dealing with a difficult health decision. It was a good start. And then came the real test.

When I was in the ER last week the pain was horrible, but even worse was the fear. My anxiety around doctors has been getting worse, and I was practically panicked at the idea of a doctor I didn’t know giving me stitches. What if he messed up? What if there was a broken bone they hadn’t noticed on the x-ray? What if he somehow hurt me? On top of that the pain was intense. For a while, I tried not to cry out of habit. Then, finally, I had an epiphany: it was ok to cry! This doctor didn’t know me or my history. I would never see him again. Plus, crying in this situation was not only acceptable, it was expected. I mean, I had a big cut that had been bleeding for hours and the doctor was dabbing at it to get away enough blood that he could see it clearly. Of course it hurt like hell! Why shouldn’t I cry?

So the tears came. They poured down my face and I did nothing to stop them. I didn’t make a scene. I didn’t yell or scream or sob loudly. I didn’t exaggerate but I also didn’t hold back. And you know what? It felt so much BETTER to let all of that out!

This is a long process. I need to unlearn more than 20 years of habit, but I know I can do it. I just need to make more of an effort to cry when I feel the need to cry. Wish me luck!

Does this sound familiar? Have you experienced anything similar? Please comment below – I’d love to hear your story!

5 Comments | Decisions, Expectations, Frustration, Healthcare, Limitations, Milestones, Pain, Raves, Symptoms | Tagged: , , | Permalink
Posted by chronicrants

How to dress for a new doctor

July 30, 2015

There was a time when I never thought for a second about what to wear to doctor appointments. I just wore whatever I was going to wear that day anyway.

Then for a while I thought about it in small ways. Are the sleeves easy to push up for a blood draw? Is this shirt loose enough to get a stethoscope underneath easily? Is the outfit fast and easy to get off and back on? 2015-07-30 10.41.51

At some point, things shifted. I still think about those small things, but now I have to consider what my appearance says to the doctor. If I dress too slovenly, they’ll think I don’t care about myself. Or they’ll just have an unconscious dislike for me. If I dress too well, they’ll think I’m faking it when I talk about my symptoms. I don’t want to look bad, but I don’t want to look too good, either.

I’ve heard from friends with chronic illness that they have this same problem. They want to look decent, but maybe they don’t put up their hair or they skip the makeup or they wear a t-shirt instead of a button-down. And like me, they feel ridiculous for worrying about what they wear when what really matters is their health, but they also know much one will be impacted by the other. So they plan carefully.

I’m seeing a new doctor today. I’m excited to see him. I scheduled this appointment 2 months ago, I wrote up my notes, I have my list of questions, I read the book he wrote and I’m bringing it with me, and I’ve got all of my medications and supplements in a bag that I can bring with me so that he can see exactly what I’m taking. I’m ready. Except for my clothes. I’m still in my pajamas because I just don’t know what to wear. How absurd!

Do you worry about what to wear to appointments? Do you feel it affects how your doctor perceives you and treats you? What has your experience been? Please let me know in the comments!

Leave a Comment » | Decisions, Expectations, Frustration, Healthcare, Insensitive, Rants | Tagged: , , , | Permalink
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