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How to Explain your Illness to Friends and Family

From recent personal experience I have found it necessary for me to write this important article. Every one who has a chronic illness is faced with this issue at one time or another. People like us who are sick deal with naive people who are not informed about these not-known conditions all the time. The right ways to deal with these things is important.

First things first:
- Try not to act defensive, explain yourself calmly and as openly as you are comfortable with.
- Don't be angry---remember that these people just don't understand, and may have never heard of your conditions before.
- Be open to communication.
- Let them know that you are willing to talk about your illness, and that it's OK for them to ask you questions about being sick.

Here are my suggestions, and things that I have said to people that aren't sick:
* Try putting things in words that they'll understand. Instead of saying Postural Orthostatic Tachycardia Syndrome say, it's a heart condition.
* Try comparing your illness to things that people are familiar with. For instance, I compare the nausea that I have everyday with the morning sickness that pregnant women might experience. Or explain the fatigue part of CFS with the sleepiness that people might get when they have the flu.
* Explain to them that they usually see you when you are at your best, or certainly not at your worst. Let them know that when you feel your worst or when you feel the most sick, you stay inside or in bed all day, and that you call them to hang out with them and go to the movies, etc when you are feeling better and are able to function. This lets them know that just because they see you maybe not acting sick, doesn't mean that you aren't sick.
* Explain that you have good days and bad days. Or good moments and bad moments. One minute you could feel okay, and the next moment you could have a wave of faitgue or nausea which could force you to stop an activity. This explains to them why you usually can't plan things ahead of time, because you don't know how you will be feeling.
* Explain the difference between sitting on your couch and watching a movie to going OUT and watching a movie. Sometimes people won't understand why you can't go out of the house or go out with friends. Explain that when you feel really sick you'd rather be at home in an environment where you are comfortable and that has the medications that can help you. This also applies to why some of us can't attend school. Sitting at home lying on the couch watching a movie with a friend is a quiet activity that requires no energy whatsoever. Going to school is very different from this. Sitting at a desk and using energy to walk around school all day and concentrating is very hard and taxing on us.

Key words and phrases:
"I know this might not make sense to you, it doesn't make sense to me either..."
"Thank you for taking the time to be concerned about me and ask questions about my condition"
"This is a very hard thing for me to talk about..."
"I know it's really hard to understand it, but you don't have to understand it, you just have to be my friend."

What other's have said about talking to people without their illnesses:
"In the past, TRULY explaining things to friends and family was my most feared part of being sick. People didn't honestly understand it. My friends thought I was lazy and that's why I didn't go to class. My family thought I lacked potential and motivation and that's why I had to withdraw from school. I tried to explain things to them all and they called me a hypochondriac. People don't get so sick when they're young...it just doesn't happen, so she MUST be faking it. That's what they thought. As time went on, they started to see that when I made the sacrifices to attend family events or go out with my friends, I truly paid the price. They saw that I would not only be in bed for several days following the event, but even on the day OF the event, I would be in pain, exhausted, falling asleep, and so much more. I would be unable to walk, but I would try to do these things simply to please them. I didn't want them to think poorly of me like they so clearly did. Anyway, they saw my health get worse and worse and some of them started to come around. I can't say that everyone did, but I guess the most important ones did. I don't think there is anything specific that will work in every case. If you have explained your problems to them and they still don't understand, perhaps you should print off the Spoons story. That one puts it in a more universal light. I think it is important to let them realize that they DO see you when you're able to function...people don't see our worst and they don't know what we're like when its that bad. And the unfortunate part is that for some of them, they'll have to see it to believe it (like my family)." ~ Kristin

"Explaining my limitations is one of the things that was most scary for me. It still is scary for me, because I don't want people to view me as being as restricted as I am. I know that doesn't make much sense, because I need their flexibility and support, and therefore I need them to know and believe what my illness is like. Despite that, I don't want them to view me as being weak, so I have a hard time telling them about the things I cannot do, or the consequences that follow activities. I find that as I get to know people, it gets easier for me to be open with them about this. When I am newly acquainted with someone I have to really force myself to be honest, because I get nervous about telling them about the ways my life is different from theirs. Putting everything in context helps others grasp what we need. I think it also helps people to understand or accept our situation if we let them know that we can be a bit private about how sick we are. We don't want to tell them every negative detail, or to often be seen at our very worst, so we focus on sharing the positive things in our lives in our conversations, and see people when we feel only moderately bad (or hopefully when we feel good!). I just don't think it occurs to them until this is discussed that we are different when we are at home, in private, because we're pulling it together for them, hiding some of our problems temporarily. Since we're coping with this for the long-haul, we get out and make the best of things, and then we handle the consequences in private. If they were in our shoes they might do the same thing, but they probably haven't thought about it. Most people also haven't considered what choices they would make if they had a rollercoaster ride of symptoms changing from day to day. If they thought about it, they might realize that on one day, it might be worth it to push the limits and enjoy going out, whereas on another day one's symptoms might be severe enough so that going out was not worth it. Only the person going through this knows what she needs to do from day-to-day. They can't tell from the outside. I guess sometimes people's questions mean they care and that they do want to know how our lives work. But, sometimes there is pressure and stress in trying to answer the questions, because we don't really know ourselves why our bodies work the way that they do! Sometimes I just have to start out my answers to questions with something like, "I wish I knew!" ~ Rebecca

Resources for explaining:
The Spoon Theory is the best website I've seen that explain CFS in terms that people can understand! Provide them with some of your favorite sick websites to have them read.

A final note:
If after doing your very best to explain to your friends and family what being sick means, and everything that goes along with this and they STILL aren't supportive and understanding, just realize that not everyone can understand what you're going through, and that if you aren't in the situation it's hard for other's to understand exactly what you're going through. Don't kil yourself trying to explain over and over again about your illness. Chances are that if they don't get it the first time, then they will never get it or understand. It's not your responsiblilty to be the spokeperson for your whole illness group. Just do the best that you can, and accept the fact that some people are ignorant and will just never understand. Just do the best you can and hope for the best! That's all you can do!

I will end with a statement that my doctor made, to the people at my school, when applying for homebound services, "I have no doubt that lauren would much rather be in school with her friends like she was before she got sick, then home 24/7 by herself with her mother being ill."

If you have tips for explaining illness to others that you'd like to see displayed, please click the 'contact me' link on the left bar to email me.