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Being diagnosed with a chronic illness turns your life upside-down, and it can take you some time to figure out how to deal with it. The sooner you start managing the illness, instead of allowing the illness to manage you; the sooner you’ll start finding ways to live a fulfilling life in spite of it. It can be totally overwhelming at first, but if you take one step at a time, you CAN do it.
The first, and most important, thing you can do is find out everything you possibly can about your illness. If you’re aware of what the symptoms and treatments are, it will be easier to determine if something is related to the illness or is new.
The first source you should go to is your doctor, who will provide the basic information about your exact diagnoses, and most likely prescribe medications to help control your symptoms. Your doctor can also advise you on non-prescription treatments and refer you to specialists if that is necessary. It’s VERY important that you have a doctor you’re comfortable with, that actually pays attention to what you say and doesn’t minimize your symptoms. (For more info on doctors, check out “Who Can You Trust With Your Healthcare“, and be sure to read the comments.)
The next resource you’ll need is information on the medications you’re taking, so that you can find out what the side effects and interactions of each drug are. Your pharmacist can provide you with “patient inserts” for each medication, but there are more resources available as well.
RxList.com is an excellent site for information on many drugs. It is easier to read than the tiny type on the patient inserts provided by the pharmaceutical companies, and provides more comprehensive data than the printouts provided by the drug store. Drugs.com provides similar prescription information; and MedlinePlus includes information on herbs and supplements, as well as prescription information. If you have more than one illness, or see more than one doctor for your various issues, you should ALWAYS check on new medications BEFORE filling them to ensure they won’t have an interaction with something you’re already taking or make the symptoms of something else worse.
There are many good sources of information on symptoms, treatments, and comorbid (coexisting) conditions. Many of the links I’m providing are focused on arthritis or fibromyalgia, because that’s what causes me the most trouble, but a Google search on the names of other illnesses will provide tons of links. One of my favorite sites is About.com, since they have sections on many different illnesses, and the information they provide is trustworthy.
- The Arthritis Foundation provides a great deal of information, as well as a magazine you can subscribe to. They are also a good source for newly released study results, and information about ongoing studies.
- The National Fibromyalgia Association is another good site to check. They have a provider directory, articles, support group information, and prognosis information, and also offer a magazine to subscribe to.
- The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) has a comprehensive page on fibromyalgia, which includes a list of excellent additional resources.
- The American Fibromyalgia Syndrome Association, Inc. (AFSA) funds research into fibromyalgia and publishes reports and updates on that research, as well as having a resource list.
- Fibromyalgia-Information-Relief.com has a great deal of information available on symptoms, causes, diagnosis, news, legal cases, work problems, and nutrition. This is a for profit site, however, so it does include a bit more advertising than some others.
- In addition, MayoClinic.com has a section on fibromyalgia, as does WebMD, ProHealth.com, the Arthritis Research Campaign, and the National Institutes for Health.
- For work and discrimination information, one of the best resources available is The Job Accommodation Network. JAN provides tons of information on the Americans with Disabilities Act (ADA); reasonable accommodation; how and when to disclose your disability to your employer; federal, state and local resources; and more.
- The Disability and Business Technical Assistance Center (DBTAC) has a portal to a huge library of ADA related documents, a section about the ADA, a resource page, and training services.
- The ADA Homepage provides full information on the Americans with Disabilities Act, with publications and links to other resources. In addition, many of the sites already mentioned have sections on work issues and disability issues specifically related to fibromyalgia.
There are many excellent blogs available as well, some focused on basic information, and others focused on the personal experience of illness. (With blogs, you must be very careful, many are no more than a gigantic advertisement for some product or other that supposedly “cures” various illnesses. As much as we all wish there was, there is no cure, and anyone who claims there is, is most likely just after your money.) Here are just a few of the many reputable blogs available:
- The Fibromyalgia Research Blog
- Fibromyalgia and CFS Blog
- Big Little Wolf’s Daily Plate of Crazy
- How to Cope with Pain Blog
- Graceful Agony
- H.O.P.E.
- FibroHaven
- In Sickness and In Health:A Place for Couples Dealing with Illness
In addition, a support group or forum is very helpful, giving you a place to vent and talk to others who are dealing with the same issues and symptoms you deal with. There are many forums out there, here are just a few to choose from:
- MDJunction.com – hundreds of support groups for almost any illness you can think of, MDJunction.com also has a doctor search and a section to use to find insurance. In addition, if there’s not already a support group for your illness, you can start one.
- Fibro360:A Community of Hope and Understanding for People suffering from Fibromyalgia
- YouTube (http://www.youtube.com/results?search_type=&search_query=fibromyalgia&aq=f) has videos available about fibromyalgia (this search had over 3,000 results.)
- If you have a FaceBook account, there are many groups available for tons of illnesses, and if there isn’t one for your particular problem, you can set one up.
There are also many books available about fibromyalgia, CFS, chronic pain, fatigue, and chronic illness, available both online and at local bookstores.
Finally, the hardest thing about being diagnosed with a chronic illness is explaining to family and friends that even though you “don’t look sick,” you have an illness that causes you a great deal of physical and emotional pain. It’s especially difficult at the beginning because you don’t really understand what’s going on yourself. There are places to find help with explaining as well:
- An open letter to anyone who has a fibromyalgia patient in his or her life.
- An open letter to anyone who has a chronic pain patient in his or her life.
- The Spoon Theory
A Letter to the Healthy World from the Land
of Chronic Pain and Fatigue
Many of the listed resources provide additional resources as well, so that you can find almost anything you need to help you cope with your illness. Living with a chronic illness is sometimes unpleasant, but with research and support, you can make your life more manageable.
Hi Wendy – just found your blog through a series of links. I’m not diagnosed as of yet (going without insurance = no doctor visits for me) but I’m having symptoms congruent with fibro…I was reading one of your posts, the self-care tips and tricks one, and you mentioned aromatherapy and using herbs, did you ever do another post detailing some of the formulas and how you use them?
Thanks!
Michelle – I fully understand about the no insurance thing. I haven’t seen a doctor in over two years because of that. I hate to hear that you’re having fibro symptoms, but welcome to the family. I’ll have another post up tomorrow about what I use (at least, what I use the most. It would probably be too long if I threw everything in at once.)
Hey Wendy, you are one resourceful lady. Thanks for the list of Internet referrals.
You’re welcome Selena – I’ve been at this a while, and I have a totally unmanageable list of bookmarks (even with dozens of folders and subfolders in my bookmarks, I can never find anything.)
Thanks for the list! Can never have too many resources
You’re welcome, Annie. That’s kind of my thought on the subject too. I figure the more places we have to look, the more likely we are to find what we need. I was thrilled when I found MDJunction, I’ve been looking for a forum that worked for me for several years, but hadn’t found one that was the right “fit” til now.
I worked in healthcare for 30 years and had a routine surgery that caused me to develop Perphiral Neuropathy, I lost my job and when my Cobra ran out no one would insure me and I was not poor enough to get Medi-Cal. The hoops and the terrible things I had to do to get approved for SSD and Medicare border on inhumane. I am so ill that I can not walk and yet they expected me to show up in Court at 8 am – I could not drive had it not been for a dear friend I would of not made it the three times they made me come. They wanted all this paperwork and I said what if I can’t make it to court and they said you will be denied. I have worked and paid into the system my entire life and never thought that this would happen to me. I had numerous other medical problems prior to the surgery, cervical fusion three levels, several back surgeries, herniated T1 – T2, Arthritis in the spine, spinedolysis, degenerated disk disease. When I finally made it to my last court date the three specialists that were there to review my medical records were suprised that I had worked as long as I did considering all of my medical problems. But I am the sole provider of myself and had no choice. Then you have to wait 2 years for your Medicare to become effective…I wonder how many people die waiting for their insurance. Our System is broken if you work your whole life and are responsible and God forbid you get ill….you are like garbage. No one seemed to care except my dear loving doctor. Today on one of my support groups a member killed himself as he could not take it anymore as no one would help him. I am angry and want to do something to change this but have no idea of where to start. I have sent letters to all of our elected officals and just get an automated response. No one cares – we feed other countries and provide medical care but we do not help our own people. I am going to keep writting letter until someone listens to me. When you are sick you feel grateful if you well enough to take a shower and put some lipstick on or go to the store. But they think you can fill out mounds and mounds of paperwork and go and sit in traffic for two hours and then find out that your case won’t be heard for some reason this day so come back in 6 months. The Social Security doctors who evaluated me did not spend 5 minutes with me and from that they denied me. My Vet spends more time with my dogs than they did with me. We have to fight to get our rights. I have never been so disappointed in our Country and now they borrowed money from our Social Security money that we put in – what gives them the right to borrow OUR money? Plus they are going to cut our benefits. We should be charging them intrest for using OUR money. They do not care because they do not have the same system that we have. They get excellent health care when they retire, 80 or 90% of their wages – who gets to vote themselves raises? They are suppose to be public servants – but they are nothing but greedy people. Thank you for letting me vent.
Nancy,
Vent away. You haven’t said anything I haven’t heard from dozens of others, or that I haven’t thought myself . . . It’s horrible how people are treated when they get sick or hurt and can’t work any more. I’ve got a friend who just had about 12 pounds of hardware put in his back, and is in constant pain; and all he worries about it being able to get back to some kind of work because his fiance is tired of him “sitting around the house being lazy.”
Social Security is set up (on purpose) so that people who truly can’t work will give up, end up on the street, or die before they finally get approved. Those who don’t have a family to feed them and give them a place to live have almost no chance of surviving long enough to get their benefits. Then, if they do survive to the end of the process; family, friends, and even total strangers complain about them being “paid to sit around and do nothing.” Honey, The vast majority of those on SSDI would trade the lousy benefits that force them to live below the poverty level for a healthy body and ability to work any day of the week, and twice on Sundays.