I read somewhere that properly diagnosing chronic illness can take from two to three years. Many of you wait even longer. In the meantime, while the doctors scratch their heads, we're expected to be happy we're alive. And that's if they don't write us off with "It's psychological."
It took a year and three doctors before I was diagnosed with scleroderma. Just remembering what I went through during that year-from-hell gets my blood boiling and I was one of the lucky ones.
If you are experiencing symptoms but don't have a diagnosis yet, here are some tips that I hope will help you get through this trying time a little easier.
Trust yourself. You are not crazy. Physicians have referred many people to me before they had a diagnosis, even doctors who don't know what else to do for their patients. ALL of them eventually received a medical diagnosis. That's right. ALL OF THEM.
Maybe I see a skewed sample of the general population but I don't think so. Medicine is slowly catching up to the experience of hundreds of thousands of people reporting symptoms for which there is no hard, "objective" test. They should be believed. Even the Veterans' Administration has come to recognize that when a combat veteran says he is suffering from PTSD, he is not faking. We do not want to be sick and it just pours salt in the wound when anyone suggests we are making this stuff up.
Learn who you can confide in and who it's best not to. Your loved ones may be among those who have doubts, especially if you don't look sick. They may not understand that there is a huge amount the science side of medicine needs time to deal with or just doesn't know.
Many chronic illnesses develop slowly and the symptoms overlap. There are few 'hard, objective' diagnostic tests that rule-out or rule-in a particular disease. Your family and friends may be frustrated and confused. Before your struggle, they thought doctors knew everything and, like Gregory House, could have you diagnosed and treated within the time it takes to microwave the popcorn. When given a choice of trusting the doctor or trusting you, you might lose out.
For those who are open to it, you can try educating them to this process. To those who aren't, avoid them like kryptonite. They will suck away your precious energy.
But I'm getting side-tracked. My point is, that even when those around you are questioning the reality of your symptoms, trust yourself first.
If anyone, friend, foe or doctor, tells you any variation of "It's all in your head," please, resist the urge to spit in their eye. On the other hand, I'm telling you, getting angry and defensive on your behalf is better than doubting yourself and becoming depressed. Just regulate your anger so that you don't alienate the very people you need. Do that by being direct, controlled and civil when you say, "That makes me angry." Then let it go.
When your doctor tells you to go to a psychotherapist, don't throw the baby out with the bathwater. Some doctors will refer you to a psychologist because they truly believe it would benefit you to talk to a professional who can help you cope as they try to figure out what is going on medically. That is great. Take the referral and try it out.
On the other hand, many doctors will tell you to see a shrink because they don't know what else to do with you. It could be your anxiety, depression and anger makes them uncomfortable. Sad but true. That doesn't devalue the benefit of a good therapist. Take the referral or find your own. You may discover it is actually a relief to talk to a good therapist and there could be other benefits.
Deb wrote to me about her experience after reading my article, Five Rules for Living With Chronic Illness. Before she was diagnosed with neurocardiogenic syncope she was "in and out of the emergency room for two years and saw scores of "ologists" - cardiologists, neurologists, endocrinologists, internal medicine, you name it. But because I never completely lost consciousness (I could always hear what was going on) the common theory was that my condition was psychosomatic. So I saw a psychologist. He saw one of my spells during one of our sessions and told me "it definitely is NOT psychosomatic, it's physical.""
It took two more frustrating years before Deb was accurately diagnosed but at least she had validation that her symptoms were real.
Hint to doctors: Listen to Deb, who writes, "What doctors need to realize is that we, as patients, don't expect them to know everything. We do expect them to listen and treat us like intelligent, rational people. Maybe some of us are square and don't fit into the round holes most doctors see everyday; but that doesn't mean our symptoms aren't real."
Finally, as hard as it is, nurture yourself. As a chronic illness patient you will be telling your story to a million people, a million times. You will visit a gaggle of doctors, nurses, lab technicians, receptionists, offices and hospitals. You will fill out reams of forms, give up quarts of blood and pee, be poked and prodded, dress and undress a thousand times. It is exhausting. Stop long enough to replenish yourself body and soul. If you pray, pray. If you meditate, meditate. Laugh! Give yourself a pity party for twenty minutes (no longer),complete with chocolate! If you, have just one person, place or thing that eases you back to your peaceful place, be grateful and spend time with them.
Above all, listen to your gut.
Dr. Aletta will be featured at CafeMom the week of July 19th for 'Ask the Expert'. Join the discussion as parents rearing kids while living with c.i. share experiences and information. Please provide your comments to this post. Your feedback, stories and suggestions are greatly appreciated!
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