http://notdoneliving.net/openletter/id
An Open Letter To Those Without Invisible Disability Or Chronic Illness …

By Ricky Buchanan on May 10, 2009

Having an invisible disability (ID) and/or invisible chronic illness (ICI) means that many things change. Just because you can’t see the changes doesn’t mean they aren’t real.

Most people don’t understand much about these disabilities/diseases and their effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand …

… These are the things that I would like you to understand about me before you judge me…

Please understand that being disabled/sick doesn’t mean I’m not still a human being. I have to spend most of my day being very careful what I do, and if you visit I might not seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker that ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome

Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either.

Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything that I do.

Please understand that the effects of chronic illnesses and many disabilities are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the bathroom and back, while the next day I’ll have trouble sitting up. Please don’t attack me when I’m worse by saying, “But you did it before!”. If you want me to do something, ask if I can and I’ll tell you.

Similarly, my illness/disability may vary suddenly, meaning I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

Please understand that “getting out and doing things” does not make me feel better, and can often make me worse. Chronic illnesses/disabilities may cause a secondary/reactive depression (wouldn’t you get depressed if you were stuck in bed 23 hours a day for years on end?) but they are not caused by depression. Telling me that I need some fresh air and exercise is not not correct and probably not appreciated – if I could possibly do it that, I would.

Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something else more exciting. Illnesses and disabilities do not forgive their victims easily.

Please understand that I can’t spend all of my energy trying to get well from my incurable chronic illness/disability. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability is coming to the realization that you have to spend energy on having a life while you’re sick/disabled. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness/disability.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought; and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with a certain illness or disability then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, if something worked we would know about it.

If after reading that, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don’t expect me to rush out and try it. I might not even reply. If I haven’t had it or something like it suggested before, and it sounds reasonable, I’ll probably take what you said and discuss it with my doctor.

Please understand that getting better from an illness can be very slow. And getting better from an invisible disability might not happen at all. People with chronic illnesses have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out, if it ever happens.

I depend on you – people who are able-bodied – for many things.

But most importantly, I need you to understand me.

My first impressions of Net10 Wireless cell phone service isn't good ( http://www.net10.com/ ). I'd just bought 2 phones, and had activated them, because we needed to keep in touch in case of emergencies. Meanwhile, we were trying to port our Verizon cell numbers over to the newly activated Net10 phones. First, Net10 customer service tells us we need new SIM cards, which they'll mail to us in 3-5 days, on the 5th day, after not getting the SIM cards, I sent an e-mail asking where they were. They replied: the shipment was canceled, and the porting of the numbers has been finished, I only needed to activate them online. I tried the website, and was unable to. I then called their number to speak to someone to get it taken care of, he had me enter a lot of codes, and supposedly everything had went through. I hung up, only to discover that I could make calls out on one phone, but not receive calls on it. The other phone could do neither. I called Net10 back, and the customer service person had me enter more codes, to no avail. He told me to wait 2 hours, and try the phones, and if they didn't work, to call back again. Well, they didn't work, so I called back, and this representative had me enter lots of codes, and then she decides I need SIM cards after all. Which will take 3-5, or even 7-10 days. Now, we have no cell phone service at all. I have also used up minutes trying to activate the phones.
I had asked the customer service rep to give me an alternate number to call, so I could have this matter escalated to management level. She didn't provide me with that info., I have also sent an e-mail to Net10 customer service, and no replies so far.
I must also point out that I am hard of hearing, and I had a hard time understanding the representatives because of their accents, and the phone connection was extremely poor, I strained to hear everything they said, and could barely make out what they were saying.
With  a special needs child, and also several family members with serious health problems, and disabilities, we needed to be in touch whenever we needed to.
I am hoping that Net10 will get this straightened out soon, but am doubtful.

Has anybody ever run across a directory for "dial-up friendly" websites? This would be ideal for those of us connecting to the net at 38kbps. Thanks.

We will be going back to dial-up internet service. We were using my cell phone's service ( Alltel aka Verizon ) to connect to the internet via USB cable, using the phone as a modem. They were charging a flat fee for the data service ( side note: ever since Verizon took over, the connection speed dropped dramatically ). Anyway, we can no longer afford the cell phone service period ( going to be using a pre-paid cell phone ). There is no cable service, or DSL in my area, and we can't afford satellite internet service.
What I am asking of my friends, please hold off sending videos to watch, and music to listen to. Although I greatly appreciate you thinking of me, there will be no possible way for me to watch them on a dial-up connection. The links could be sent via PM, or e-mail, and I could try to watch them when I have access to a hi-speed connection.
I might add that it seems like any Web 2.0 web site is not dial-up friendly either.
Side note on cell phones and service: I wish Google Voice would come out with their own cell phones ( using Android ), and cell phone service. This would be a great "poor man's" cell phone. I would guess that this might happen in the future, but not anytime soon. Thanks. Take care, J.

Magma

The current top videos to watch right now.

Google Voice

I would love to see Google Voice come out with their own cell phone service. Unfortunately, we will be canceling our Verizon ( Alltel ) service because we just can't afford the service anymore.
The economy has hit us in a variety of ways, and we have to cutback where we can ( we'll be going back to dial-up too, because we used our cell phone as a modem for connecting to the internet ). We still need cell phones, so a pre-paid plan looks best for now.
I do have a Google Voice account, and really like it. If Google Voice wants to run a beta test of a cell phone service, please sign me up!

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In Memory of Todd Daniels
http://todddaniels.blogspot.com/

http://genesisofaman.blogspot.com/
http://www.naturecoastbeekeepers.com/

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In Memory of Todd Daniels
http://todddaniels.blogspot.com/

http://genesisofaman.blogspot.com/
http://www.naturecoastbeekeepers.com/