Wondering how to give solicited medical advice

April 25, 2014

There’s a big difference between giving solicited and unsolicited medical advice. I think I’ve got a handle on giving unsolicited advice, but now a friend is asking for help and I’m not sure how to respond.

When you’re consumed with health issues, it’s easy to see them everywhere you look. I spend so much time and effort on getting enough sleep, eating the right foods, getting enough exercise, avoiding bad foods, etc., that it drives me up the wall to see people with more choices doing unhealthy things. The thing is, if the person doesn’t ask for advice, then offering it can be off-putting. They may be insulted or simply choose to ignore me. They probably aren’t ready to hear the message anyway. So I respond by posting tips to Facebook, where my family and friends can choose to read them or not. I’ll make comments that aren’t directed at them, just to get them thinking, like “Isn’t it terrible to think how many hormones people get from the animals they eat? I wish the FDA would do something about that.” I don’t badger anyone. This has been working out pretty well so far.

But when someone asks for advice, those rules go out the window. I’m back to wondering, how much is too much? If I give her too much information, will it scare her off? And can I trust my own perspective? I want to warn her that many doctors won’t run the right thyroid tests or prescribe the best medications. I know this is true. I’ve experienced it. I’ve read books about it. But if I tell her this now, before she’s found a doctor, will I be saving her from years of problems or will I be unnecessarily passing my own bias on to her?

I know that my friend needs help. She emailed me her blood test results and her symptoms yesterday. I will be honest that I can offer some good advice on some areas, but I don’t know anything about others. That’s fine. She knows that, and it won’t lower my credibility in her eyes. And she knows I’m not a doctor and won’t hold me liable for anything I suggest, so there’s no worry there. But I do see problems with her test results and her symptoms. She’s turning to me because she’s not getting great medical care. I want to help her. I just need to figure out the best way to do that.

How do you help friends who ask you for medical advice? Do you give advice or not? How much detail do you give? Do you warn them about the horrors of dealing with the medical community, or do you hold back on that? What else do you think I should consider?

 

6 Comments | Decisions, Educating, Expectations, Frustration, Support | Permalink
Posted by chronicrants

Watching the Boston Marathon with a chronic illness

April 21, 2014

It’s hard to explain to people who’ve never lived here, but the Boston Marathon is a BIG DEAL. Sure, everyone knows about last year’s bombing, so they know we want to support our runners more than ever this year, but it was a really BIG DEAL before that, too.

When I was a kid, many years we’d stand along the route and cheer on the runners. I knew they were doing something BIG, but I didn’t understand how BIG it was until I got a bit older. As an adult, I cheered on the strangers and often people I knew, too. I haven’t gone every year, especially since I didn’t always live in Boston, but I’ve gone most years that I’ve been in town.

Last year I skipped the marathon because I just didn’t have the energy. I was sad to miss it, but I didn’t feel like I had a choice. It was just too much. And so I was at my parents’ house when I got a phone call from a relative who wanted to talk about the bombing that we hadn’t even heard about yet. We spent hours glued to the tv, calling and texting everyone we knew who might be at the finish line.

But this year is different. I’m by no means “healthy,” or even back to where I was just a few years ago. Still, I think I could manage to watch for just a little bit. The thing is, I can’t be sure, and so I didn’t make plans with friends to go watch it, and going alone is boring, but I might do it anyway. There are new security restrictions because of last year, so I’m thinking about how I could avoid bringing a backpack. My meds fit in my purse, I can carry water bottles in a plastic bag, maybe I can bring lunch in disposable containers…. I’m planning and plotting, trying to figure out how it could work. I need to protect myself from the sun, stay warm, drink lots of water, and eat a healthy lunch. And I need to make sure I don’t expend too much energy in getting to and from the spot I’ll watch from (whereever that may be.)

So this year, like so many others in the past, I’m hoping to watch at least a bit of the Boston Marathon. I just hope I can do it without wearing myself down too much.

1 Comment | Decisions, Fatigue, Frustration, Limitations, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Is remission possible?

March 28, 2014

I saw my naturopath yesterday and she surprised me with one of her goals. She said that she wants to get me to believe that once I’m better, I’ll stay better, and that I won’t relapse. That had never occurred to me. [As a side note, I’m very impressed that she picked up on this mindset of mine and chose to address it head-on.]

Several friends and family members keep insisting I’ll get better. I keep trying to explain to them that I’ll never be 100% healthy. I’ll always have some symptoms, and I’ll always have these medical conditions. These are lifelong diseases that won’t ever go away, and I’ve accepted that. The best I can hope for is to go into remission, which I’ve never really thought of as a possibility for me, though I know it’s a possibility in general. As for symptoms, my gastrointestinal problems are almost entirely better and my fatigue has been improving, but I think I’ll always be at risk of those returning, and I’ll certainly continue to have pain. Maybe the pain can be reduced, but no one has suggested they’ll be able to get rid of it completely.

I’ve accepted all of that. I’m ok with that. If we could just get rid of my fatigue, I’d be ecstatic! But what my naturopath said really stopped me in my tracks. This whole process has been so traumatic. The symptoms, their impact on my life, the insurance issues, the uncertainty over my future, have all changed me. There are some good changes, like a new appreciation for the little things in life, and a desire to keep my life simple, without the “busyness” that so many people take pride in. I’m glad to have come to these realizations.

But there have also been some bad changes, like more fear. I’m scared to spend money, because what if I can never earn money again? And even if I’m able to work, what if I get sick again and need it for that? I’m scared I’ll never find a life partner who can handle all of my health issues. I’m scared I’ll be a burden on my parents. I’m scared to make plans for anything big (tickets to a show, a small trip out of town, attending a wedding) because what if I have to cancel at the last minute? And if I do get better, what if I get sick again? Will I have the strength to go through this all again. And what if I never improve in the first place?

I think that all of these fears are natural. I also think I have to get rid of them. My naturopath is right: if I’m going to have a goal of feeling X% better, then when I reach that goal, I have to trust that I’ll stay there. I’ll need that mental attitude to propel me forward. Sure, I might have setbacks. In fact, she agreed that I probably will have them. Then medications will be adjusted and I’ll improve. But she thinks there won’t be many and that they’ll be short, just a few days or a few weeks; not months or years.

I want to believe that. I do. Really. But I can’t. Not yet. After the trauma I’ve experienced recently, I’m just not ready. But I’m working on it. I love the idea. I hope she’s right. So when I eventually get a therapist (I started looking for one recently) I think this topic will be at the top of our agenda.

Leave a Comment » | Decisions, Expectations, Fatigue, Frustration, Healthcare, Support, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Why do folks focus on a treatment’s potential problems?

March 19, 2014

I mentioned in my last post that I’m going to start using a CPAP machine soon. It’s used for sleep apnea, which isn’t too uncommon, so most people know someone who has tried one, or have tried one themselves. It was just a small note that had little to do with the main point of my article, but still, I noticed that no one commented on it, even though they commented on other parts of the article. I noticed it because that’s not what’s happened with my in-person interactions lately.

I can’t criticize people for commenting on other’s lives, because I do it too. Actually, I probably do it more than most people. But there’s a big difference between commenting and pointing out the negatives. What’s even worse is that in this case, people are pointing out negatives without offering solutions. So why are they doing this?

For years now I’ve been fatigued. I’m unable to work. I barely date. I miss all sorts of social events. I feel lousy. Now we discover that I have a form of sleep apnea and a CPAP machine could help. There’s no guarantee, of course, but it might help, so why on earth wouldn’t I try it? In fact, I’m excited to try it! That’s why I’ve already mentioned it to quite a few people, and why I’m so annoyed that almost every single time, the response has been to point out potential problems with it. They tell me about a friend who was bothered by the noise, an ex-lover whose skin was irritated by the mask, an acquaintance who got tangled up in the cord. They tell me about these problems and I don’t know why. Are they suggesting that I shouldn’t even try it because one person they know had a problem with it? Are they suggesting that I continue to feel horrible and not even attempt to fix it because I might be inconvenienced?

Well let me tell you, I’m already inconvenienced. A lot. And I’m not about to let worry about some little inconvenience stop me. If that was the case, I wouldn’t have changed my diet and I’d still be feeling nauseated all day every day. If that was the case, I wouldn’t have changed my thyroid medications and found the improvement in energy levels that I have. If that was the case, I never would have done my own medical research. If that was the case, I wouldn’t have improved at all over the last 2+ years.

Today I emailed my family and friends with a health update. I do that occasionally. When I mentioned the CPAP machine, I included this:

“Note: Please do not tell me how terrible CPAP machines are. Just don’t. Almost every person I’ve mentioned this to has told me they don’t work, they’re loud, they’re ugly, they’re uncomfortable, etc. If I had a gas leak, would you tell me not to fix it because of the hassle of calling the gas company? If I had cancer, would you tell me not to get chemo because of the side effects? No? Ok, then please don’t say anything negative about this medical treatment unless you’re also telling me how to fix said problem.”

So far, I have received only positive or neutral feedback. They’ve congratulated me on taking this step. They’ve said that they hope it works. I got one story of a friend who was helped by it. So from now on, when I tell people about the CPAP machine, no matter how well I do or don’t know them, I’ll preface it with that paragraph. It may be rude, but I don’t care. Taking care of my health is the hardest thing I have ever done, or probably will ever do, and I don’t need the “help” of negative feedback from ignorant people.

Oh, and by the way, I’ll get the CPAP machine in just two short days! Yay!

13 Comments | Decisions, Educating, Expectations, Fatigue, Frustration, Insensitive, Rants, Symptoms | Permalink
Posted by chronicrants

« Previous Entries
Next Entries »