For many people with chronic disease, the toughest thing is convincing themselves they’re not crazy. This is especially true for those with an illness with no clear etiology.
For millions of people around the world suffering from multiple sclerosis, lupus, fibromyalgia, chronic abdominal pain, ALS, rheumatoid arthritis, certain types of cancer, chronic fatigue syndrome, and hundreds of other illnesses, just making it through the day is overwhelming. Not only do many of these individuals have to endure a life of constant pain, but they also have to struggle with the unrelenting anxiety inherent with their conditions. Not having a clear diagnosis, undergoing treatment with often equivocal benefits, and being uncertain of what the future holds can lead to total internal chaos.
Over the last ten years working in the emergency department, we’ve gathered information from our interactions with patients with chronic disease. If you are suffering from a protracted illness, hopefully, this advice will assist in keeping you sane and allowing you to get through the day:
Keep in mind that our current medical knowledge is limited. Don’t let any physician talk you into thinking there is nothing wrong with you. Just because we can’t figure out your diagnosis, it doesn’t mean you don’t have the symptoms you’re experiencing.
Be your own advocate. Anyone with a smartphone or a computer can have the entire wealth of medical knowledge at their fingertips. You should be doing research on your condition. You should be reading up on the latest articles, and you should be asking your doctor to explain what you’ve read.
Be kind to your physician. When patients present with a complaint, physicians will often work up the common causes first. It’s not until later, when the work up has come back negative, that we’ll start looking for more esoteric diagnoses. This often takes time, so be patient with your doctor. Communicate your frustrations in a proper manner. See yourself as part of a team with your physician; the more knowledge you have, the better off your team will be.
Join a support group. There is nothing better than to be in a group of empathetic individuals. There are myriad support groups on-line for just about any illness. Not only is a support group of some kind good for your mental health, but it will often provide you with information regarding new treatments. Be careful, though, not to believe everything you hear or read. The Internet is full of information, some legit, some misleading, and some plane wrong. Make sure you’re wary about the advice others provide.
Don’t lose hope. Your state of mind is your most precious commodity in combatting the daily toils of dealing with a chronic illness. Don’t blame yourself for your illness. You didn’t cause this to happen. And don’t let anyone convince you that you’re crazy, because you’re not. There are new medical advances every year, so keep hope alive.
Seek other opinions. Don’t be afraid to seek a second opinion. Or a third or fourth. A physician’s medical knowledge is directly shaped by that physician’s unique professional experience. If during our medical training or practice we see a case of chronic fatigue syndrome (CFS) later turn out to be an Anaplasmosis infection, we are going to be more likely to work up all future patients presenting with fatigue for tick-borne illnesses. There is not a single physician out there who has the entire breadth of medical knowledge inculcated in their brain. Furthermore, in our careers, each of us has seen a group of patients with different illnesses, different symptoms, and different diagnoses. There may be someone out there who is more knowledgeable about your set of symptoms than others, so don’t be afraid to seek another opinion.
Don’t stop taking care of yourself. Eat healthy, exercise, and minimize stress. These have all been shown to help with any disease process, including chronic illness.
Acknowledge your feelings. You may feel frustrated, angry, or discouraged. Don’t ignore your emotions, but learn to manage them. It doesn’t do you any good to waste your energy dwelling on negative thoughts. Instead, use the energy to help you overcome your illness. Remember, you’re human. Don’t become your disease.
Alberto Hazan is an emergency physician and author of Dr. Vigilante and The League of Freaks series. Jordana Haber is an emergency physician.
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