Too many times with an Invisible Illness people look through us, treat us like we don't exist. This site is set up so people KNOW that we are NOT invisible, but we are "ABLE".
Welcome to
This Site is designed to help you find answers to questions you are asking about invisable illnesses, to help you in communicating with your family, friends and the Medical Profession, as well as to give you a place where you can go, talk to others who have the same issues, and get some answers as to what works for them and what isn't as effective, and you can share what works and doesn't seem to work with you. Everyone is a unique individual, and every condition affects each person differently. NOTE: This web site is NOT designed to take the place of ANY Physician or to diagnose or treat. The purpose is to help educate and help provide relief knowing you are not alone. It also does not list ALL of the invisable illnesses, as there are many that we are either currently working on getting the information to add in, or are unknown to us at this time. We are not Physicians, nor do we claim to be. This site is for informational and support purposes. If there are any that you would like to see listed on this site that you do not see, please drop us a note letting us know what you would like to see more information on.
You are NOT alone
An important part of the process of dealing with an invisable illness is in knowing that you are NOT alone! There are others who have the same problems you do. There are so many Doctors who are not fully educated or unfamiliar with new technologies or advancements on some of these, or don't know how to figure it out when test after test comes back clear. They run test after test and everything says normal. At that point there are other ways to find out if you have Fibromyalgia, for example. No tests can show it. But if you have been suffering Chronic Pain for longer than 3 months with no relief, and at least 11 of the 18 pressure trigger points are sensitive, it's pretty likely that your Doctor will lean towards Fibromyalgia, a very real and dibilitating syndrome or another closely related condition. And a treatment regimen needs to be implemented to help you regardless of which they lean towards most in the beginning.
Family & Friends don't Believe you?
Are you having trouble with your family and friends not believing you and thinking it's as so many Drs will say "All in your Head"? That you are faking the pain, faking how tired you are, that you are trying to get out of work, or the big kicker, that you are just getting LAZY?? This is one of the biggest frustrations of the Invisable Illness, YOU KNOW what pain is, you feel it everyday, you know the difference between being tired, and being dead tired! You want to shake them and say WHY WOULD ANYONE WANT TO FAKE THE TERRIBLE THINGS I FEEL?!?!?! You may even lose friends or family even due to your condition, I pray you do not have to go through that. It is very heartbreaking. But you wish every day that you can be understood. You are taking steps in the right direction by looking online for help. We will have links for you to many really good places to get more information. Once you are finally diagnosed, ask the Dr if they have other patients with it, what is their plan of action on treating it, etc. Find out as much as you can on the Dr Clinic you are going to in regards to the illness you are diagnosed with. That will help a lot in the long run and help relieve the pressure of everyone saying "You look healthy as a horse, why won't you do this or that". They don't understand because it's not like a broken leg that you can visually SEE the broken leg. You are 'broken' somewhere inside that is not visable and therefore people can't comprehend your pain, fatigue, fogginess, etc. There are 2 very good stories I wish to share with you. One is The Spoon Theory and is written by a very intelligent woman with Lupus, which is very closely related to Fibromyalgia. Her name is Christine Miserandino and she has a very informative website that I hope you visit often, it can be found at Butyoudontlooksick.com It explains some of what you feel and go through on a daily basis. The other is A Letter to the Land of Normals, and is a good piece also to print out and give to a friend or family member who can not understand how you feel, what you are going through, and this is truly very real!
About Support Groups
Have you found yourself in a position now that you seem to have more things wrong than before? Like it seems that everytime you turn around you have another issue or concern? Do you have Family or Friends who truly understand and are there to talk to about your issues and concerns? Do you want to talk with others that have your conditions and get answers to the things that come up day to day, but you forget by the time you have your next Dr appt? Do you have concerns about your Treatment Regimen and want to talk to others and get opinions that you can discuss with your Dr? Do you have times you are just plain lonely with your Illness and want understanding with a place to vent where people are friendly and compassionate and will listen, care, be there for you, give you hugs, advice if needed, but most of all they understand every little thing you are going through? We are listing some Support Groups that can offer you a place to meet other people around the world with the same concerns you have, the same issues, and more support than you can imagine. Just remember when you join ANY online Support Group that what you post is public, the only time something would not be public is when you send a private message. Every topic under the sun can be found by doing a search for it. So remember, on an open thread, don't post anything you wouldn't want anyone to know. You can visit our links for Support Groups.