A lot of your friends will desert you.
Because MCS is such a complex illness and it is extremely difficult for people to understand it until they get it themselves, many of your friends and family will think you are nuts and will abandon you. It is possible that they won't let their children around you because they think you are mentally unstable or your illness might be "catching."
MCS is a full-time job.
NOT COUNTING THE TIME SPENT FILLING OUT DISABILITY FORMS, having MCS is going to take up an awful lot of your time. Trying to find substances that you can tolerate, researching the illness through the web or the library, talking on the phone to others who have MCS, trying to find foods you can tolerate, shopping at a health food store, researching vitamins and supplements, handwashing items in case you don't have your own washing machine, filing articles (after you read them, of course!), educating yourself about biochemistry and neurology, etc. (need I go on?) will take up a lot of your time. Once again, this doesn't take into account any time spent on a disability case and collecting information from all the doctors you have seen.
Doctors aren't going to like you.
Unless you get really, really lucky and happen to find a doctor who is open-minded, smart and not caught up in his/her ego, doctors aren't likely to find you to be their favorite patient. Many doctors won't take information brought by their patients seriously. They like patients who get better and don't make them work hard. We rarely get better; we are not popular. This brings me to the next topic.
You may be committed to a mental hospital against your will.
Many, many people who suffer from MCS often exhibit unusual symptoms or acquire "odd" habits (in order to live--not because they have a mental disorder) get slammed against their will into mental hospitals by doctors, police, and family members. I have come frightenly close to this horror, but I never had the full experience. I will be contacting others who have been subjected to involuntary committment due to MCS reactions and will try to give some practical advice about what to do about and how to prevent it. Like I said, no one said the news on this page was fun. Here are some tips from a person with MCS who was committed involuntarily that you might want to file away (if not memorize!):
On the brighter side, you will make a lot of really interesting friends (if you try) and may learn some wonderful things about yourself
As inconvenient as MCS has been, I have to thank it for teaching me tolerance, for allowing me to develop new skills (like doing websites!), and for offering some of the most interesting opportunities to meet and coordinate with some of the best people the world has to offer. I am grateful, in an odd way, that I got sick, as I never would have met the strong, dedicated, wonderful, delightful and interesting people under other conditions. To paraphrase from the wonderful "Little House on the Prarie" books, when a locust plague decended on a ripe wheat crop, Ma said, "Well, at least we won't have to buy food for the chickens for a while." I try to concentrate on the fact that I don't have to buy chicken food for a long, long time!
Social Security Disablity and MCS
The disability process can take YEARS, and you must have a medical doctor who is willing to back you up. Without that, SSDI is not going to happen. If you ever get the stage where you get a lawyer (count on being denied twice, then you get the lawyer and appeal to a judge), you will MOST LIKELY win (with a good lawyer, you have about a 75% chance), but, again, the average length of time to do this is about 1 1/2 - 2 years. You have to prove that you can't work--the folks at SSDI don't really care WHY you can't work, you simply have to have a doctor verify that you can't work. If you really want the money and benefits, be prepared that you may have to settle for a psychological/psychiatric diagnosis, even if you know it's not true. You want the money, and no one needs to know WHY you have SSDI unless you tell them.
I found a VERY interesting website that deals with ALL KINDS of aspects of MCS. I would urge you to take a look at it. The author has sample letters for doctors, sample forms, information about applying for SSDI that was written by lawyers (I thought it was TERRIFIC and INCREDIBLY USEFUL towards winning a case). The URL is www.mcsinfo.homestead.com. Please check this site out--it may mean the difference between winning and losing your appeal to win your SSDI case.
Changing your name won't really help, as your Social Security Number (SSN) is how they track you down. I changed my name (this is easy, you can do it by yourself at your local courthouse--check your library for books on how to do this, or you can contact me for help at a reasonable hourly rate), but everything (medical records, applications, financial stuff) is filed by your SSN. You can appeal to your local SS office to get it changed, but they PROBABLY won't grant your request unless it's a life or death situation and you have a doctor who is willing to veryify that you have a need for this. Most doctors will not do this, as it is POSSIBLE (not saying you will do this, it's merely possible) to set up a dual identity and have two SSNs. The government doesn't like this possiblity (neither will your doctor), and this number is usually only changed if you have your identity stolen electronically. I have not heard of anyone being successful in getting their SSN changed due to medical reasons. Lord knows, I have tried and I am TENACIOUS. I had to contend myself with having a new name because it made me happy and if I go to another city, THEN I can start over with the hospitals and doctors. I have gone through all the hospitals in my city and they don't get MCS, either. My solution? No more hospitals, I don't care HOW sick I am. I'd rather die than undergo the torture of being in a hospital, both physically and mentally. I have an Advance Health Care Directive that CLEARLY states this and found a family member who is willing to be my agent, wear a beeper and respect my wishes. In other words, if anyone touches me or takes me to the hospital, I can sue. It's in black and white now! They have a fair, legal warning.
Until orthodox medicine recognizes this, we are pretty much screwed in the Social Security realm. We need doctors to testify that we really are sick, AND they have to keep verifying that we are sick--you don't get SSDI and then you are home free for life. You case will be up for review periodically, IF you get it. Hiding won't let a doctor see you to make sure you are still sick, and any reputable doctor won't do that by mail.
Michelle, there aren't any easy answers here. Avoidance of stuff that makes you sick is the obvious, but difficult, first step. Finding a doctor who will back you up is even harder. Staying the course to get through "the system" to get SSDI is the most difficult of all. It can pay off, but you have to be strong and wait, wait, wait.
A lot of people ask me about SSDI, and there is no rushing the process. You will probably get turned down twice, you will have to get a lawyer, and you MAY have to settle for a psychiatric diagnosis. If you really want the money, you will have to resign yourself to these possibilities. No one said it was fun or easy, I'm afraid.
More to come--please give me some time!
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