And no one knew I had health problems

January 18, 2016

I realized it part way through lunch, but I figured it was temporary. By the time everyone was done eating, it was nagging at me. It felt weird. And on the way home, it felt like something was missing. But when it happened again the next day, I began to wonder if this was how I was supposed to be feeling.

I went to two different potluck lunches this weekend. One was with people I’d never met before (I won’t bore you with the long story of how that came about) and the other was with a mix of friends, acquaintances, and people I didn’t know. And both times, I walked away without talking to people about my health problems. What the….???

Believe it or not, I’m one of those people who talks a lot. (Those of you who have been reading for a while probably just broke out in laughter. Of course I talk a lot.) I also talk openly. Sure, some things are private, but not as many as you’d think. If you read my older posts on this blog you’ll see the progression. I used to try and hide my health problems, and at some point I Just couldn’t do it anymore. It was exhausting, both physically and emotionally. So I started hiding less and sharing more. The more I did that, the better I felt, so I just kept on doing it. Put those two things together and pretty much everyone I meet figures out that I’m bi, that I’m Jewish, that I have health problems, that I love to read, and a ton of other random stuff about me. It’s not like I shout these things from the rooftop, but I make a random comment and it’s obvious.

Thanks to a combination of things I’ve been feeling a lot better lately (woo hoo!!) That’s how I was able to go to lunch two days in a row. It’s also how I was able to get through both lunches without talking about my health!

I was completely shocked. At the first one, one someone offered me food I just said thanks, but I have a lot of food allergies so I brought my own separate lunch. That’s it. No talk of Celiac or other autoimmune issues. We talked about a lot of things where my health never came up. It was weird.

The next day’s lunch was different. I should say that I didn’t talk to anyone about my health who didn’t already know about it. It did come up with one friend when we talked about me writing for this book project (you should totally write for it too!) Another friend asked how I was doing with my recovery from the surgery I had a few months ago. A couple people who were standing with her asked about it. But that really has nothing to do with my chronic illnesses. Aside from that, my health didn’t come up. Again, when people offered food I just said I had food allergies and I’d brought my own. That was it. It was straaaaange…….

I sort of liked it, but it also felt sort of wrong. I loved not standing out in the way that I usually do, even though that will take some getting used to. I liked being “normal.” It was a real treat! But the thing is, it also felt wrong because this is who I am. It’s not all of who I am, but it’s a big piece. In the last 4.5 years I’ve written 582 blog posts here. I’m working on a couple of other projects. It affects my sleep, my eating, my activity levels. It affects how much I date (or not), whether I work (or not) and how much time I spend with friends (or not.) This is a really big part of me that these people now know nothing about.

Then again, I only just met them. If I spend any significant amount of time with anyone, they’ll know. They’ll have to. Some days I can’t hide my symptoms even if I want to. Some days I can barely function. Still, this was a new experience. It’s been years since I got through a meal, party, or gathering without bringing up my health at all, and it just happened twice.

Huh. Maybe I should buy a lottery ticket. Because clearly something weird is happening.

What about you? Do you find your health becoming a topic of conversation at gatherings? Or do most new people you meet not know you’re ill (if your illnesses are “invisible”) or not know the cause (if they’re “visible”)? Please comment below. I’m curious to know how this goes for other people, and I’m sure other readers are curious, too.

4 Comments | Decisions, Educating, Expectations, Raves, Relationships: Family & Friends & Dating & Sex, Symptoms | Tagged: , | Permalink
Posted by chronicrants

4 steps to start your own chronic illness site

December 21, 2015

I started this blog four and a half years ago without knowing what it would become or how long it would last. What it became was my lifeline. It has helped me in more ways than I can say. It provides me with an outlet for my thoughts and feelings, a community, people who understand, a way to stay connected when I’m feeling isolated, support, and so much more.

Readers have said they wished they could blog and/or communicate on social media. Well, you can! And it doesn’t even have to involve writing.

I’m no social media expert, but I know a bit, so let me share some of what I know with you.

STEP 1: YOUR NAME

First, decide if you’re going to be yourself or anonymous. I chose to be anonymous for this blog. A bit over a year ago I started a Tumblr account under my read name. Tumblr is very different. I also have a blog under my real name, but it’s business-related and has nothing to do with chronic illness.

STEP 2: YOUR MEDIUM

Now that you have your name, decide how you prefer to communicate. Choose 1 or 2 ways to start. You can always add more later. You could write, speak, or do video. If you found this blog, you probably know how to find others. Look on YouTube for examples of videos and do online searches for podcasts. Get a feel for what’s out there and think about what you’d like most.

Another option is to create photos, memes, and things like that. Or you might choose to share what others create. My Tumblr account is almost entirely  reposting what I see in my feed. I only write my own original things rarely.

Are you an artist? You could draw cartoons, share paintings, or share photos of clay work.

STEP 3: YOUR PLATFORM

For blogging you can go to WordPress.com and create a free account (or pay $20 per year for your own domain) or you can set up a hosted blog that you pay for on WordPress.org. There are other blogging sites, of course. These are just the ones that I use.

If you want to make videos, you can start by posting them to YouTube.

I don’t know anything about creating podcasts, but I bet you could find a few handy dandy guides online.

To share short thoughts and memes, try Tumblr and Twitter. They’re very different and are both worth investigating. I started out on Twitter and did well there (you can find me at @msrants) but the atmosphere has changed and so have I, and now I’m more comfortable on Tumblr. Create a couple of free accounts and see what feels right.

Do searches for #chronicillness #chronicpain #chronicfatigue #spoonie and other tags, including tags for your diagnosis. If you like what someone is posting with those tags, follow them. For example, on Twitter I follow activists. On Tumblr I follow activists and people who share funny chronic illness memes, because sometimes I just need to laugh at this stuff. Of course, I also follow people who post nothing but photos of cute dogs…. you can definitely branch out!

If you’re going to share photos, check out Instagram. Again, look for tags to help you decide who to follow.

I don’t happen to know anything about Pinterest yet, but I’m sure it has some fabulous chronic illness resources, so check it out and see if it’s something you’d like to participate in.

Finally, there are a lot of general chronic illness groups on Facebook and also specific groups for certain symptoms and diagnoses. You can create your own page and start building a following, though I think it might be a bit harder to get followers there than with some of the other sites.

STEP 4: GET STARTED

You’ve decided whether to use your real name or an anonymous one. You know if you’re going to write, speak, draw, video record, etc. You know which social media platform(s) you’re going to use. Now go do it! You might not get a huge following quickly and that’s ok! When I started this blog it took a while to get followers. Now I have a few hundred. My much younger Tumblr account has almost 1200 followers. Does it matter? To some people it does. To me it doesn’t. I’m getting exactly what I want. I’m writing and I’m building community. What could be better?

WHAT ABOUT YOU?

Has this post gotten you to start thinking about starting your own blog, podcast, video channel, or social media account, etc.? If so, let me know! I’d love to hear your thoughts. And please ask questions and I’ll answer them the best I can.

If you already have your own site, please comment and fill in anything I’ve missed. I’m sure there’s a lot. I have no desire to learn every form of social media communication. I’d rather spend the time writing here!

1 Comment | Isolation, Raves, Relationships: Family & Friends & Dating & Sex, Support | Tagged: , , , | Permalink
Posted by chronicrants

Choose either/or this holiday season and always

December 18, 2015

How many items are on your To Do list? How many events are you supposed to attend? Personally, I’m supposed to be at a holiday party at this very moment. I wanted to go. I really did. But it was just too much and there are other things I want to do this weekend, so I had to choose either the party or something else. I chose the something else.

We all have to choose. There’s only so much we can do before our bodies rebel and we know it. Unfortunately, not everyone else knows it. So I suggest you give them a choice.

Tell them to choose either this or that.

Your family wants you to go to 2 parties next weekend. Tell them you’ll gladly go to one and they can choose which one.

Or they want to decorate the tree and go present shopping and take a walk through the snowy woods. Tell them you’d love to do any one of those, and they can choose which one.

Every time there’s a list of things you’re expected to do, tell others they can choose. Of course, you might have to rule out a few options altogether. Keep it manageable. But tell them to choose.

This does a few things. First, it means that you won’t be overwhelmed by trying to do too much.

Also, it shows your loved ones that you truly want to participate. Maybe you can’t do as much as they can, but it shows that your desire is there, and that when you miss out on something, it’s not by choice.

Third, it makes your limitations clear. It shows everyone what you can and can’t do. Since we so often hide how we really feel, this is a good way to let your limitations be seen.

And finally, and so importantly, it gives your loved ones a feeling of control. You probably already know how out of control you feel by the unpredictability and difficulty of your chronic illness(es), but it’s easy to forget that our loved ones feel the same way. They want to make us feel better and, lacking that, they just want to have a little bit of control in a chaotic situation. So give them that. It will help ease a bit of their frustration if they know you’ll be doing what’s most important to them.

Finally, give yourself the same rule: either/or. Make a list of the many things you want to do and tell yourself that you’ll do either one or another, but not all of them. Be realistic. Then feel good about whatever it is that you do. Because that’s an accomplishment to be proud of.

2 Comments | Decisions, Educating, Expectations, Fatigue, Frustration, Limitations, Relationships: Family & Friends & Dating & Sex, Support, Symptoms, Unpredictable | Tagged: , , , | Permalink
Posted by chronicrants

Am I doing enough?

December 15, 2015

A friend called me and was upset. She had just spent a while talking to a friend of a friend with the same diagnosis as her, but who was doing a lot better because she had done a lot more research and tried many more treatments. My friend felt like she wasn’t doing enough. I knew that feeling well. I’ve had it many times myself. Maybe you have, too?

I think it’s common to feel that way. After all, we’re taught that when we’re get sick we go to the doctor and get better, so when we don’t get better right away, we wonder if it’s our fault. Then we read about someone who was magically cured through their own research and we wonder why we haven’t done the same.

Of course, not every illness is easily cured by a doctor. And those magic cures are often individualized treatment plans that were figured out through years of research and trial and error. We see the results, but we don’t see the backstory. Meanwhile, we’re all in the middle of our own backstories.

The thing is, if you’re doing all that you can, that’s enough. It has to be. I know people with my same diagnoses who can not only work, but jog every day and go hiking. That’s great for them, but I can’t do those things and thinking I “should” isn’t helpful. In the same way, someone might be able to do a lot more research than I can. And that’s ok. Someone else can’t do as much as me, and that’s ok too.

About 4 years ago, I started to do my own research. It was hard. Damn hard. I was so fatigued that I could rarely read more than 5 pages at a time without falling asleep. The brain fog was so bad that I had to read each paragraph multiple times before I understood it. Often I read a few pages, fell asleep, woke up with the book on my lap, and had to reread what I’d just read because I’d forgotten it all. But I kept going because I was determined. It paid off, because it led to me doing so much better. Sounds like something everyone should measure up to, right?

What you didn’t see (because I’d only started this blog earlier that year) was the several years before that where I’d given up hope. You didn’t see the years, yes YEARS, that I hadn’t wanted to do any research at all and had resisted encouragement from others. You didn’t see how long it took me after doing the research to actually put any of it into practice. And yes it has helped, but I’m nowhere near “better.”

Would my health be better now if I hadn’t put off doing research for years? Maybe. Maybe not. A lot of what I found wasn’t available 5 years earlier. I wasn’t sick enough back then to be willing to try some less conventional approaches. And it doesn’t matter. Because I did what I felt ok with at the time.

I wasn’t ready to do the research then. And that’s ok. I was doing the best I could. Physically I put all I had into working, exercising and physical therapy, taking care of myself, and having just a bit of a social life. Emotionally, I didn’t have the capacity to do the research. And that’s ok. I did as much as I could. So it was enough.

Sooner or later, you’re going to feel like you’re not doing enough. When you do, remember that if you’re doing your best, that’s enough. One day your best might be hiking up a mountain. Another day your best will be brushing your hair. Whatever it is, it’s enough.

As for my friend, she’s feeling a bit better now. I told her everything I’m telling you now, and then some. I pointed out that the person she spoke to had had her symptoms for many more years than my friend had. She’d had more time to try things. She’d had more money available to try things. We don’t know how severe her symptoms were or weren’t. And I pointed out that my friend has recently tried several new things and is currently waiting to see if they work. She’s already seen some small improvement. Waiting isn’t fun or exciting or sexy, but it’s necessary. It’s nothing to feel bad about because it has to happen. The person she spoke to had a lot of time to try things out and wait to see what happened. There’s no point in my friend feeling bad because her “during” doesn’t compare to someone else’s “after.”

So what about you? Do you ever feel like you’re not doing enough? And when you do, how do you handle it? Please share your thoughts in the comments.

2 Comments | Educating, Expectations, Frustration, Healthcare, Limitations, Raves, Relationships: Family & Friends & Dating & Sex, Support, Symptoms, Unpredictable | Tagged: , | Permalink
Posted by chronicrants

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