Why do we let our illness props embarrass us?

November 10, 2013

The other day I was talking to someone who often carries a pillow with her. Due to a back problem, she needs the pillow for sitting in certain kinds of chairs. She said she’s embarrassed to be seen carrying it around. I was surprised. Another day I Handicapped Parkingwas talking with a friend who’s embarrassed to park in handicapped spaces. She knows she needs them, but she looks healthy, so she worries about what other people will think. I tried to encourage her to get the pass, but she refused. These are two stories, but there are so many others. I hear these kinds of things all the time.

ENOUGH!

I’d like to say that I never let those things embarrass me, but it wouldn’t be true. I’ve come a long way, though! Occasionally I worry about what other people think, but then I remember that my health is more important that what strangers think of me. And besides, who are they to judge?

It helps to remember, I’m not the one who should be embarrassed! And neither are you!

If I need to ask for a seat on the train, why I should I be embarrassed? The people who should be embarrassed are the ones who don’t immediately offer up their seats. The people who should be embarrassed are the ones who don’t get up for the pregnant lady with 2 kids and groceries who steps on the train. The people who should be embarrassed are the ones who listen to music so loudly that it bothers other passengers.

When I park in a handicapped space I am very aware that I do not look like I have any disability. But why should I be embarrassed? The people who should be embarrassed are the ones who judge me without knowing me. The people who should be embarrassed are the ones who “borrow” a relative’s pass even though they themselves don’t need it. The people who should be embarrassed are the ones who park horizontally, taking up 3 spaces in the lot just so their car won’t get dinged by someone else’s door.

Sometimes I need a wheelchair when I’m in a place that involves a lot of walking. Sometimes it gets in other people’s way. But why should I be embarrassed? The people who should be embarrassed are the ones who get annoyed at me and say rude things. The people who should be embarrassed are the ones who don’t take 2 seconds from their day to open a door for me. The people who should be embarrassed are the ones who are so preoccupied with whatever they’re reading on their smartphones that they bump into other people.

Needing some sort of help for the sake of our own health and well-being is absolutely, positively, without doubt, in no way any reason at all for embarrassment. Rude, inconsiderate behavior is. So be a good, nice, helpful person for others and you’ll have no reason to be embarrassed. And if someone says something anyway? Do what I do: simply, calmly, and matter-of-factly tell them why they’re wrong. Then walk (literally or figuratively) away with your head held high.

10 Comments | Decisions, Educating, Expectations, Frustration, Isolation, Kindness, Limitations, Parking, Symptoms | Permalink
Posted by chronicrants

The one thing I really miss about gluten

October 22, 2013

People ask me all the time if it’s been hard to give up gluten, or what I miss, or how I do it. Even though I used to wonder the same thing about others back before I’d done it, now I find these questions so strange. It’s not hard, because I feel so much better. There’s no question of how I do it, because I feel so much better; willpower isn’t 20131022_204902necessary because there’s no temptation. There’s one thing I really miss, but it’s not what most people think.

I don’t miss the gluten-filled pastas or breads at all. I don’t miss the cookies or cakes, either. Don’t get me wrong, I love all of these things. It’s just that the gluten-free versions are just as good, and I’ve realized that having them less often is fine. In fact, I now only have sweet desserts about once a month, and that’s plenty for me. I stopped eating pizza many years ago because it made me sick, so I don’t miss that. Gluten-free soy sauce is just as good for cooking as the gluten kind. Gluten-free chicken broth tastes as good to me as the gluten type. I know it’s not easy for everyone to find substitutes, and I’m glad that I have these options. I can’t substitute everything easily, of course, but for the most part I don’t care. Some things I have just stopped eating altogether, and I don’t mind. I don’t miss them. And there are plenty of foods that are naturally gluten-free, too. The truth is, my diet is better now, and I’m happy about that.

There’s one thing I miss a lot, though: convenience. I miss being able to leave my house without thinking about what I’ll be able to eat while I’m out and if I need to bring food. I miss being able to go to a friend’s house for dinner without having to bring my own meal. I miss running errands without packing snacks. I miss being out longer than I expected without worrying about what I’ll eat. I miss grabbing a cider donut with my friends while we’re apple picking. I hear that the gluten-free bakery has them but now, weeks later, it’s just not the same. I miss eating Chinese food in Chinatown; now I can only go to certain restaurants that have gluten-free items. Mostly, I miss not having to worry about it what, when, or where I’ll eat.

But I don’t miss feeling sick every single day and that makes the inconvenience completely worthwhile. I do not have any desire to “cheat” on my gluten-free diet and I doubt I ever will. The benefits are just too great to give it up for a bit of cookie.

12 Comments | Decisions, Limitations, Medication, Raves, Symptoms | Permalink
Posted by chronicrants

Please don’t suggest shortcuts unless you’re going to help pay for them

October 16, 2013

People like to offer advice. They want to help. I get that. I want to help others, too. But when the advice involves money I don’t have, and I point that out, arguing the point really doesn’t help.

Example 1: “Why don’t you order groceries to be delivered?”

This is suggested to me a lot. Yes, that would be great. It would save me time and energy and effort and the pain of walking and driving and reaching and carrying. Perfect solution. But it’s expensive. Only the more expensive grocery stores offer this service, and then they charge extra for this service. I just can’t afford it. I point this out to people and too often they try to argue that it would be worth it anyway. They don’t seem to understand that I am living off of disability payments that don’t cover all of my expenses as it is, and that might be cut off any time the insurer feels like it (well, that’s essentially the case.) So yes, grocery delivery would be incredibly helpful, but that doesn’t mean that it’s an option for me. I wish I was. I really do. But it’s just not.

Example 2: “Why don’t you use a laundry service?”

Wow, that sounds nice. Someone else would wash all my clothes and linens. I’d just have to prepare them and put them away. I’d love that! No more lugging everything down the hall, into the elevator, to the basement, and into the machines, then returning later to put everything in the dryer, then returning again even later to lug it all back up to my apartment. I would even have to fold clothes. It sounds heavenly! But I balk at the laundry prices I’m already paying: $2.50 to wash each load and $2.50 to dry each load, which is why I let some clothes dry on racks in my living room now instead of paying for the dryer. If I have trouble paying those prices, how am I supposed to pay even more to have someone else do my laundry? People try to argue that it’s not that much more to pay someone else, and it will save me money on detergent, etc. Um, I don’t pay that much for detergent (just how much do you use?) Besides, if the current cost is too much, a higher amount isn’t magically ok. It just doesn’t work like that.

Example 3: “Why don’t you order in for dinner?”

Oh, don’t get me started. It is so much more expensive to buy a restaurant meal than to cook at home. Yes, it would do wonders for saving energy and reducing pain on the days I need it most, but that doesn’t mean I can afford it! Plus, it’s just not healthy – I can’t be sure what’s in those foods, and my health is the most important thing. I have a list of easy meals to make from ingredients I always have on hand and I grow the list whenever I can. Failing that, when I feel well enough I often cook in large quantities and freeze the extras, so I can always pull something out of the freezer. People try to argue that it’s worth it to order in. Maybe it is to them. Sure, you with a job and a steady income might eat out sometimes. Good for you. But you can’t assume we can all do it. There are financial limitations, and this is one of mine.

There are so many more examples like this. I know people mean well. They really do. And I don’t mind the suggestions. But when I say I can’t afford it, that means I can’t afford it. Trying to suggest it’s “worth it” just doesn’t work. So my new response will be that if they think it’s that important, they should be offering to cover the cost for me. If they won’t do that, then the conversation is over. Kaput. Finished. I live in the real world, and in the real world I’d rather pay for medical care than for grocery delivery. Yes, that is a choice I must make. It’s a personal choice. And I’m certain I’m making the right one for me.

6 Comments | Decisions, Educating, Frustration, Kindness, Limitations, Rants, Support, Thoughtfulness | Permalink
Posted by chronicrants

Should I try to trust doctors?

October 10, 2013

I’m in a bit of medical flux at the moment.

I have a naturopath who’s very helpful and knowledgeable, but thanks to absurd politics, naturopaths aren’t licensed in Massachusetts. That means she can’t order blood tests or prescribe medications. Great. I haven’t had a primary care physician (PCP) that I’ve trusted in many years, and in hindsight, none of them were very good anyway, and some even did harm. I have never had a “good” PCP. I have some specialists who are good, but they aren’t in the specialty that I need right now. In a few weeks I’ll see a new PCP, but I’ve never gotten any value out of PCPs. Still, they are necessary for insurance referrals, so I will see the PCP and grade him based on his willingness and ability to refer me to good specialists. And when he does refer me, should I trust the new specialist?

After many years of bad health, I’m finally ready to try new treatments that could really help me. But these are all based on research that I did myself. I then ran that research by my doctors and naturopath and they all agree this is the way to go, but I had to figure it out for myself. I no longer expect a doctor to give me any answers. That means that right now, I am only looking for doctors who are willing and knowledgeable enough to implement the treatment plan that I have designed for myself, and to help catch any potential problems and fix them.

The thing is, what if something new comes up that I haven’t already researched? I just can’t trust a doctor to catch it and treat it properly. It could be big or small, but I won’t trust them. I know that trust is essential, but I just don’t have it for most in the medical field. I have seen my naturopath quite a bit in the last year+ and I mostly trust her, but not 100%  So then why would I trust someone new?

I don’t trust easily. That goes for friends, lovers, medical practitioners, and anyone else I get close to. I don’t give out trust; it has to be earned. My friends have all earned my trust. If they hadn’t, I wouldn’t consider them friends. So have my lovers. If they hadn’t, I wouldn’t have slept with them. But I don’t have the luxury of visiting doctors a bunch of times and letting them earn my trust. Most of them don’t seem interested in earning it, and the insurance won’t pay for it (nor will my bank account.)

The truth is, I have been screwed over by doctors, health insurances, and medical facilities so many more times than I have covered in this blog. Tests I needed weren’t run. Abnormal test results were ignored. Surgery was performed unnecessarily. I was blamed for my own health problems. I was ignored. I was embarrassed. I was belittled. I was outright lied to. Necessary referrals to specialists weren’t given. Important medications were denied. It’s not that I won’t write about it all, it’s that I can’t. I can’t even remember it all. There’s just too much.

So after all of that, how can I be expected to trust a new doctor? But then, what other choice do I have?

By the way, I set out to write about what I am looking for in my new doctors. I need to think about this before I see them in a few weeks so I really tried to come up with what was most important to me. I couldn’t come up with a damn thing because no matter how I thought about it, it always came back to the same problem: I wouldn’t trust them to help me.

8 Comments | Decisions, Expectations, Frustration, Healthcare, Insensitive, Medication, Rants, Support | Permalink
Posted by chronicrants

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