How much do people really want to know?

September 1, 2013

I never know how much to share. Do you? When someone asks, “How are you?” sometimes they really want to know and sometimes they don’t. But most of the time they don’t want a 20 minute answer, so it’s easy to keep things short. So who does want the 20 minute answer?

The other night a close friend was asking me for details on my treatment plan. It’s been many years since I’ve had a plan, so having one is really exciting. There’s no guarantee it’ll work, but it’s wonderful to have actions I can take. The thing is, she’s not the first to ask about it. It’s sort of long, and I’m tired of explaining it. So I was thinking I’d send a mass email to everyone.

A great passive way to share this kind of info is with a blog. But I don’t want to start a blog about my treatments. First, I’m way too private for that. Second, I’m already running two blogs, and that’s already more than enough. I could do it on here but this is anonymous, and most of my friends and family don’t know I’m writing at all, much less have the site address. So even though blogs seem to work well for several of my friends to spread health updates, it’s not for me.

I figured email is the next best thing. I started the email by telling people I won’t be offended if they ignore it. It’s only for the people who want to read it. I also told them that if they don’t read it, they can’t expect me to repeat it all later. I hate to clutter up people’s inboxes, but the whole point of this is to just say it once. So I deliberated, then sent it to everyone. I kept it straightforward. It’s detailed enough to be clear, but I avoided technical, medical terms so that I wouldn’t confuse anyone. I laid it out in stages, so it’s clear what I’m trying first, second, third, and why.

So far so good. I’ve gotten several responses, which is more than I expected on the Sunday afternoon of a long weekend. So I think I did this right. I think people are glad to be getting updates. And if not? Well, they can ignore the email.

I don’t have a crystal ball. I don’t know how much info people want. But I know how much I want to give, so I’m going with that. As usual, I’m letting my instinct be my guide. The worst that could happen is I share too much, and it’s not like I’ve never done that before!

2 Comments | Decisions, Educating, Support | Permalink
Posted by chronicrants

Finding health solutions outside the doctor’s office

August 14, 2013

This month’s blog carnival topic over at Patients for a Moment really caught my attention. It’s being hosted by Getting Closer to Myself – go check it out!

There are a few questions I could have answered, and I’m choosing this one:

How has social media impacted your illness experience?

Anyone who has been following this blog knows that I only recently began to figure out what’s causing my various symptoms. But do you know how I’ve been finding answers? It sure wasn’t at the doctors’ offices! They were all pointing fingers at each other, saying it was someone else’s specialty and not offering me any answers. The real journey started with a book.

I was bored while all of my friends were at work, so I went to the library. I thought I’d check out the books about one of my symptoms because it had been a long time since I’d done that, and while I was perusing the shelves, a title caught my eye about hypothyroid symptoms. I grabbed the book and immediately started reading. That book led to another, and those led to web sites which connected me to Facebook groups. Suddenly I found an entire community of hypothyroid patients online, mostly on Facebook and Twitter and in other places, too. They were dealing with hypothyroid and a lot of the accompanying issues that I also face, like adrenal fatigue.

Being ill can be isolating in the predictable ways: spending days at a time alone at home, not working, and having to miss social events are of course difficult. But the thing that many people don’t realize is that it’s also isolating to be sick and not know why, which symptoms are attributable to which diseases, which symptoms are relevant and which aren’t, or what to do about it all. This can make a person feel very alone, because it seems that no one else understands. Finding books, blogs, web sites, Facebook groups, and Twitter chats of people going through the same thing makes me feel a lot less alone. But they’ve also given me hope because, for the first time in many years, I have treatment routes to explore! In fact, if it wasn’t for the Chronic Babe online support group (which sadly no longer exists) I would have never begun seeing the naturopath who cured my IBS and who has helped me in so many other ways over the past year.

Let’s face it, social media is far from perfect. Finding the right groups and accurate information can feel like looking for a needle in a haystack, but it’s possible. We have to watch out for scams and inaccurate information. There are still doubters. But for me, social media has been incredible. It has given me a community to turn to, answers to my questions, and the hope that I could improve. I can’t wait to see what happens with it next!

Leave a Comment » | Educating, Expectations, Healthcare, Isolation, Medication, Raves, Support, Symptoms | Permalink
Posted by chronicrants

Must I educate everyone?

August 5, 2013

I went to a party the other night. (As a side note, YAY! I got out of the house and went to a party!) I know the hosts through a former job, and I had met a lot of the other guests through them and through that same job. I hadn’t seen them in years, so while at a normal party one or two people may ask, “What do you do?” at this party everyone asked. I hate that question, but it’s hard to avoid. I mentioned to one guy that I was unemployed. He said he wished he could get that gig. I was about to respond, “Yeah, it’s a great gig except for the lack of any income!” and just laugh it off, but our host overheard and mentioned that I was out on disability.

So here’s the problem: he shouldn’t have said that. I didn’t mind, but in general, it should be up to the person in question to disclose their disability status or not. It’s no one else’s place to do that. So I feel like I should say something so that he knows and won’t do it to anyone else. After all, I don’t mind, but there’s a good chance that someone else will. My guess is that he was trying to help me out but clearing things up, but there many times and many people where I don’t want it mentioned. After all, this was a party. I didn’t want to discuss my health – I wanted to have fun!

The thing is, I’m tired of educating everyone. Yes, I’d like to help him avoid offending someone else, or making someone else uncomfortable, but do I need to do that? I mean, it’s not my job to educate everyone, right? And it’s exhausting to be doing that constantly. I like to think of myself as a health activist, but it doesn’t have to be 24/7. At some point, enough is enough, and I think I just hit the point where I draw the line.

I like to educate others. Really, I do. I help whenever I can. This weekend I offered advice to parents whose teenager recently came out as gay and is having a hard time (I’m bi.) Today I’m helping someone newly dealing with chronic pain figure out the support services that exist in our area. But must I always correct honest mistakes? Maybe not. Maybe I’ll just let this one slide.

And yet, I feel guilty. So maybe I’ll say something after all….?

3 Comments | Educating, Frustration, Insensitive, Intrusions, Rants, Support, Thoughtfulness | Permalink
Posted by chronicrants

Incredible what 2 years can bring

July 24, 2013

The other day I wrote what has so far been my  most popular post. I felt inspired, so I wrote it. And then I went on with my day. But that night, just before bed, I looked at my calendar and saw the note I had made for myself a while back: it was the 2 year anniversary of this blog!

Anniversary

I feel bad, like I forgot a friend’s birthday. This blog has been so helpful for me, and I forgot its anniversary! It got me thinking, too, about how much has changed since I started writing this.

Two years ago I was just starting to feel much worse, which in hindsight is probably why I started this blog when I did. I wrote every single day for months, until my energy waned and I was forced to cut back. Still, even now it’s rare for me to have a day that I don’t think about what to write here. I have so many ideas, so many posts composed in my mind, and I hope that one day I can type them all out.

Two years ago I was typing into emptiness. My mom would sometimes read my blog, but that was about it. Now I have Subscribingdozens of readers on my mailing list, many more who follow me through twitter, and probably more I don’t know about who use Feedly, Digg, or some other reader. I get comments, which mean so much to me. It’s fantastic to know that people enjoy, are touched, or feel comforted by this blog. I want so much to reach out, and this my way of doing it.

Two years ago I thought I communicated well about my illnesses. Now I know better. As I write about things I often don’t even think to discuss, I realize how much I censor, whether intentionally or not. When I question if I should write about something, I realize that if I can’t be open about it here, in relative anonymity, then I must be pretty closed in real life. And when people comment on certain posts to say how rare it is to have these discussions, I remember that I’m not the only one with this problem.

Two years ago I was working full time. I knew my days of working full time were limited, but I expected to count them in years, not weeks. Now I have been out of work for almost as long as this blog has been around. I didn’t immediately return as I had hoped, and I’ve been coping with that. I don’t know if I will return to work some day. I hope that I will. But I’m trying to accept the uncertainty of it all.

Two years ago I thought I knew what was causing the worst of my health problems. Now, through a lot of research, I’ve found multiple other possible causes. I’ve discovered ways that I’ve been improperly treated. I have learned about new tests that need to be run. I have looked for new practitioners to see, including “non-traditional” ones.

Two years ago I thought I could never make “drastic” changes to my diet. Now I’ve redefined “drastic” because the changes are so worthwhile that I no longer think of them as being difficult. Food doesn’t matter. Health matters. Food is a means to an end for me, so I’ll do whatever it takes to make sure my food isn’t making me sick.

Two years ago I needed to vent. I got frustrated by so many health-related issues. My family and friends tried to understand, but they just didn’t get it. Now I have you. You understand. Sometimes things happen that suck and it helps to commiserate with people who’ve been through it themselves. Insensitive comments and rude actions need to be changed, but we also need to deal with them ourselves on a case-by-case basis. You’ve helped me do that. This blog has been more cathartic than I ever would have imagined when I started writing it.

So thank you for two wonderful years. It’s been a wonderful journey so far and I’m looking forward to seeing it continue.

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Edit: I forgot to mention that this is my 357th post here. In case you were wondering (I was, which is why I went back to look it up.)

1 Comment | Expectations, Frustration, Isolation, Job, Raves, Support, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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