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what your doctor couldn’t tell you …

This post was featured in ChronicBabe Blog Carnival #7: Tips for brand-new ChronicBabes.

So you’re newly diagnosed with a chronic illness. I’m sorry to hear that..

You’re (probably) relieved to have some sort of diagnosis finally delivered… and (almost certainly) freaking out and scared about what it is and what it means for your life. Chances are, your doctor has sent you home with pamphlets of information, websites to look up, and a pharmacy’s-worth of confusing prescription drugs. They probably warned you what to expect in terms of disease symptoms and medication side effects  …

… but there are some “side effects” that your doctor couldn’t tell you about, because they aren’t in the textbooks … these are some things that I wish someone, anyone had told me. This list isn’t intended to scare you, but I’m also not a big fan of sugar-coating. I guess that should be #1 on the list: you learn to deal with more crap that you don’t want to hear than you ever thought possible. And you will survive that. There will be days when you think you’re maxed out, but you will find that you are far stronger than you thought you were.

I started with the lifestyle things because I think it was the hardest stuff for me to deal with. I included some more practical things at the bottom of the list that I think are really helpful too.

  • “Lucy, you’ve got some ‘splaining to do!” And it will not be as much fun as Lucy makes it seem. It will be incredibly frustrating. Most of your friends and maybe even your family will not understand what you are going through. They wont understand why you have suddenly disappeared from the world – well, their world anyway. They won’t understand why you just can’t get out of bed to see them. Or why you keep cancelling on them. They won’t get why you keep insisting that you’re sick when you look just fine. After awhile a lot of them will give up and slowly wander away. (I’ve written a couple of posts about it, and it seems to be a pretty universal problem in the chronic disease world as far as I can tell. I’ve heard it called “disappearing friend syndrome.”) People find their own ways to cope with this situation. Here are a few that have worked out wonderfully for me:
    • Try sending people a link to The Spoon Theory, it helps a whole lot (but only if they take the time to read it).
    • Join the chronic disease community. We are all over Twitter, the blogging world, etc. Check out http://www.chronicbabe.com. I can’t begin to tell you how helpful everyone has been in my life. (Ok, maybe I can.) Obviously we can’t replace those friends, but a few new friends doesn’t hurt. It really helps me to talk to people who are going through the same pain and frustrations. It took me a long time to be willing to do this. I had a hard time identifying myself as a “sick person,” but somewhere along the way I realized that being part of this community doesn’t mean I have to identify myself that way.
    • Learn when to battle. I used to think every friend was worth fighting for. Maybe they are, but I’m sorry to say I don’t have the energy anymore. You will learn to figure out which friends are neglecting you because they try but don’t understand, and which ones just can’t be bothered. It sounds cliché, but your true friends will stick by you. You will need them. Everyone else, well, [choose your expletive of choice here]…
  • Guilt. Expectations can be a royal pain. Even in perfect health, living up to all the expectations people have of you – and you have for yourself – is not an easy task. When you have a chronic illness, they might be even harder to attain. There’s a lot of guilt involved. I feel like I’m letting down my friends, my family, and most of all myself.  It’s frustrating that you can’t do what you want to do when you want to do it anymore. I don’t have any good advice on this one –I’m working on dealing with it. It’s hard.
  • Free-time is a questionable commodity. Sometimes you will just sleep and sleep because you have no other choice. You won’t always be able to get everything done that you want to. Of course, sometimes you will get tired of sitting around in bed or your favorite comfy chair … suddenly you will have too much free time on your hands. (Yes. It’s possible. Who knew?) But that doesn’t mean you’ll be able to spend it the way you want to. As such, your hobbies may change. Embrace it.

I hope I haven’t horribly depressed you. It certainly wasn’t my intention, but I really wish someone had told me that these things can happen. I couldn’t figure out why my friends had disappeared. I felt like I was doing something wrong… I didn’t realize that these were common occurrences. I hope this is useful for you. If you have any questions or need someone to talk to, please feel free to contact me. gradstdntwlupus(at)gmail(dot)com or @gradstdntwlupus

Practical considerations:

  • Buy a weekly pill box. Maybe one that has more than one space per day if you have meds at different times. The one I got at Target has morning & night spaces plus it lets me pop out each day separately which I find incredibly helpful. Also useful: the little, flat pocket-sized pill holders for when you want to just slip in a couple of meds.

Set aside a time each week to fill in all these boxes. You don’t want to be going through all those different medications at each dosage time. It eats up your already limited time, you’re likely to make mistakes, and if you’re very tired it makes it a heck of a lot harder to take your meds.

  • Make sure you are comfortable in your bed and your room. You will probably be spending a lot of time in it. You’ve probably already experienced this. It tends to get depressing if you’ve got springs digging into your back or your walls are all white, etc. This sounds silly, but I didn’t realize how important decorations and such are until I started spending days at a time in my bed.
  • Take a good look at your wardrobe. Chances are that you have been prescribed meds that make you gain weight. You might end up gaining and losing weight as your meds change  and as your eating habits change to deal with the medication side effects (more hunger vs upset stomach, etc). Slightly stretchy waistbands and looser shirts help you to adapt to those changes so you don’t end up with a closetful of things you can’t wear. Try to buy things in mixing and matching sets, it helps your options a little. It’s tragic, I know.

If you have been diagnosed with rheumatoid arthritis or lupus, chances are you are going to have deal with joint problems. There are a couple other things to take into account: buckles and buttons. Swollen joints in your hands will make buckles and buttons hard to work with. Especially in the mornings when you’re in a rush.

  • Food. Food can be hard if you aren’t living with someone who can cook for you. Figuring out which foods your stomach likes when your drugs make it unhappy is key. Also, if your condition includes fatigue then you probably won’t have the energy to cook all the time. Try to buy things that are easy to cook. Cut and keep them ready or frozen when you have time. On days that you have more energy you can cook and freeze. Try meal-size containers packed with a more or less complete meal. If someone is cooking for you, they might be willing to make a little extra so you can freeze some.
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13 Responses

  1. I really ought to take your advice on the food – I find myself resorting to crappy quick food that my body cant truly handle because I am just too exhausted to cook. These tips are great!

  2. Heh, I’ve never found a pill box big enough for my needs. I take over 20 pills a day, in about 6-7 doses, as well as some liquid and powdered stuff.

    What I think everyone with chronic illness needs to know is that for almost any illness there are extremely effective treatments that your doctor doesn’t know about, things that are much safer and much more effective than those things he’d prescribe you. That goes for e.g. all autoimmune diseases, CFS/ME, fibromyalgia, endometriosis, depression, anxiety disorders, HIV/AIDS, COPD, most cancers and many other illnesses. Doing your research properly can change your life, like it has changed mine (and doing my research has changed the life of dozens of other people, as well!)

    • yes, you need to do your research. but not everyone has the knowledge/training to understand the literature. different treatments have different amounts of supportive research – in some a cases the allopathic meds do, in others other treatments have more. plus, i think theres something to be said for the placebo effect (on both sides) – your faith in whichever treatment you choose can make a difference. so research is definitely important to figure out which treatments are the best choices for you. thanks for adding that point!

  3. thanks so much for putting it together….wish someone had told us what to expect! its unbelievably hard in the beginning but knowing a bit about the road ahead does help a lot. so thanks again…im sure many newly diagnosed would find it helpful!

    love-
    shweta

  4. This was an AWESOME post SR! So informative! Jealous I didn’t think of it first 😛

    You are a fantastic writer 🙂

  5. Shweta & Annie – thanks so much, my dears! 🙂 xoxo

  6. @CFS_MEfighter @gradstdntwlupus very true, especially about the friends!
    June 24, 2010 PM 03:53:58 via web in reply to gradstdntwlupus

  7. […] Posted on June 26, 2010 by SR (@gradstdntwlupus) My last post, “what your doctor couldn’t tell you” was directed towards newly diagnosed patients. In it, I tried to outline some key things – […]

  8. I nodded my head the whole time I was reading your post. It is a really good explanation of the aspects of chronic illness your doctor probably doesn’t know anything about. Too bad most clinics don’t employ social workers or patient advocates that can help us with these kind of things…

  9. These are think kinds of things I wish had been available in a brochures 18 years ago when I was diagnosed with rheumatoid arthritis at the age of 24. I am so thankful that the internet now is such an effective tool for those of us with illness to not only learn more about our own situations, but continue to share with those who hare just being diagnosed. Thank you for a lovely article from the heart.

  10. […] what your doctor couldn’t tell you … June 2010 10 comments 5 […]

  11. […] what your doctor couldn’t tell you … June 2010 10 comments 5 […]

  12. […] last post, “what your doctor couldn’t tell you” was directed towards newly diagnosed patients. In it, I tried to outline some key things – […]

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