For Family and Friends
How to help your loved ones.
While there is nothing specific for support of family and friends it is highly important. Chiari and Syringomyelia are considered ‘invisible’ conditions, as it is hard or impossible to see the effect of these conditions on the outside. There is no set way to help each individual, but letting him or her talk about whatever they want is immensely helpful. We did nothing wrong to get this condition and have often tried every single treatment we can think of and spent hours researching this condition. So while some suggestions of treatment are helpful most aren’t and often can insult the person, so please don’t be upset when we don’t take your suggestions.
Understanding we can’t always do things at certain times even if we had done them before and that our symptoms can change hourly and our medications can change our personality. We are the same inside and if you get past the medication, the pain and the fear you will find the one you loved before they got sick. Please don’t abandon us when we are not ourselves.
We also may seem to be fixated on our condition, we understand this and often its because there is lack of support and information so we need to dedicate ourselves so we can get the medical attention and help we require.
Treat us like you normally did; invite us out like you normally did. Just don’t be upset when our health interrupts with your plans. We are trying hard to get back to a normal life and need support. While there is nothing specific for support of family and friends it is highly important. They are often forgotten and left to suffer in silence. They are just as scared and confused. It is very scary watching your loved ones suffer knowing there is little you can do to help.
If you know someone who is friends and family of someone who is chronically ill or has any of these conditions they need as much support as the person so they can continue being at their best the person who is ill. Take them out, spend some time with them and let them know you are there if they need a hand or a break. Doing this not only helps them but the person who is ill to as they often feel guilty for what is happening with their family and friends. While it is not their fault their health will take a toll and knowing their support has support will defiantly take stress off them.
For some reading check out But You Don't Look SIck
and also read The Spoon Theory - a great analogy on what it is like to deal with a chronic health issue.
Note from Web Master -
What I've learned in having a traumatic illness and follow-on badness:
People look very hard for reasons why this won't happen to them. They can't deal with random events, and they look for flaws in your life to explain why it happened to you and why it won't, therefore, happen to them. These range from: not having the right beliefs, eating the wrong foods, working the wrong hours, being too engaged, not taking the right number of holidays, going to the wrong part of the world, etc.
People also feel I am being 'negative' when I don't take there advice. However the advice you give range from "take a pill" when I am in pain and, "lie down" when I am tired. Strangely I have already learnt these things in my life. I have spent my time researching ways to get better because I don't enjoy being sick. If you wish to give advice thats fine, but please don't take offense when I don't try your advice because odds are I have already tried it - TWICE!
I have never met advice I have not tried even from health care professionals because I am trying everything and anything to get better. Yes there are new things coming out all the time and if you have knowledge of my problems and heard of something I am happy to hear about it. Please just use your common sense. Being sick is hard enough - having to defend yourself on top is hard. I have lost friends because it annoyed them I was sick and didn't act healthy and didn't just take a pill when they suggested it.
The fact your reading this just goes to prove you care and your want to know the best way to help your loved one. The best advice I ever heard was that "Its in all of us to try and fix a problem - sometimes that is impossible and the best thing to do is be there to listen when they can't be fixed."