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 with the emotional side of things as they try to figure out what is going on medically. That is great. Take the referral and try it out. A good therapist will totally get what you are going through, the fear and anger, on top of more fear and anger. A good therapist will give you a safe place to sort it all out and practical guidance as to what to do with it all.
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. Don’t let that 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.
Lovely article thank you. It goes a long way towards redeeming the psychiatry professions so damaged by the UK’s Prof Wesselley and Co.
Thank you. As another person who suffers with neurocardiogenic syncope, I know what it is like to live daily with a physical condition that people assume is psychosomatic. As if I could just pull myself together and learn how to not faint and inconvenience people so much.
I am so glad to hear you tell people to trust themselves. It took me a long time and a good therapist to learn this. And I still faint even though some people would rather I didn’t, thank you.
Thanks for this. As somebody commented above, it’s always nice to hear the truth about “psychosomatic” illnesses from a psychologist herself. I’ve linked to your post on my blog: cinderbridge.blogspot.com/2011/11/psychosomatic-or-just-somatic.html
My husband went through a long period of “hell” before his diagnosis. Many doctors AND worker’s compensation, said he had nothing wrong with him. As his muscular disease worsened, and he found a new doctor, he was able to get a diagnosis from a specialist. It took 3 years and so much mental anguish not being believed! That was the hardest part. When you know something is very wrong but no one can see it or define it.
I am so sorry you and your husband went through that awful stress of not being believed. Sadly that is too common a story. His persistence and your belief in him is what brought you to a medical professional who took the time and had the curiosity to figure out his condition. You are both to be admired for your persistence.
What’s your husband’s muscular disease called?
Praying for everyone in this page. I was diagnosed with ITP about a month ago. My life has changed completely. I been in and out of the hospital twice in the past month for platelet and blood transfusion. I had no idea how sick I was until my hemotologist did a blood work on me the day before Thanksgiving this year. They called me the next day to inform me that I needed to leave work and check my self in the hospital. Unfortunately, my doctor prescribed prednisone. They started me with 6 pills a day and oh boy what a nightmare. This week I’m only taking 4 but I still feel very not me. I think a lot about my past experiences and feel very very uncomfortable. I can’t wait to be off this medication because I feel anxious, worry, sad, just all negative. I want to deepen my relationship with God and I been talking to a lot of people. I normally don’t talk to people I’m like more reserved. I want to share that God is in control! I praise his name