This is a letter to my friend, K, whose primary care doc recently said “You may have lupus. Or something else autoimmune.” I'm hoping this information can help her and anyone else start to cope with a new potential diagnosis.
Dear K,
I can hear in your voice that you are totally freaked out. One day you have a rash, then you get blood work done, then your primary care doc is telling you that you are “sick” with something autoimmune. It’s such whiplash to go from being fine to being not fine in a matter of weeks. And it’s so scary not to know what you have, when the possibilities all sound so awful (systemic lupus, rheumatoid arthritis, dermatomyositis, other mystery syndromes).
Autoimmune illnesses occur when the body “attacks itself”… your immune system overreacts and attacks normal, healthy cells and tissues. The results can damage nerve fibers, joints, and much, much more as these attacks persist over time.
Unfortunately, autoimmune illnesses are hard to diagnose. Many of them share overlapping features (like fatigue, joint pain, and muscle pain) that make it hard to distinguish one illness from another. And they involve a complex mix of symptoms and signs (positive blood test results, etc.) that evolve over time. You can have your first symptom or positive blood test one day, and nothing new for three weeks or three years. Sometimes, you have to wait for the signs and symptoms to “add up” over time to reveal a specific diagnosis, too. You can even have signs (positive blood tests) for an illness without having any symptoms, or have all the symptoms without having any signs.
Given the nature of autoimmune illnesses and how they reveal themselves, it’s probably going to take a long time (months or years) to find out what exactly you have. So, now what do you do? How do you go from the initial symptom (for you, fatigue and a rash) and sign (positive ANA) to a diagnosis?
Track who you see, and what they say. Keep a log of all doctor’s appointments, starting with your first primary care visit about the rash, your first symptom. Track date, name of doctor’s office, name of doctor, and contact information. Take notes during the appointments – what problems did you discuss with the doctor? What did the doctor say about them? What kinds of homework does the doctor want you to do (start a medication? Take another test? See a specialist?) What are you and the doctor hoping to see in the bloodwork, with the test, or with the medication?
Get records from every doctor’s visit and every test you have (bloodwork, x-rays, MRIs, biopsies, or anything else related to your autoimmune situation). When you check in for an appointment or test, immediately ask how you can get a copy of the notes or test results from today’s visit. There’s probably a form to fill out, then you wait for the dr. to either mail or fax you the information you requested. (You might even have to pay a per-page fee for their time and expense in sending your records to you.)
The test results are important, measurable evidence showing what’s going on with you. The notes from the doctor’s visit will probably tell you more than the doctor did during the appointment. Both the doctors’ notes and test results will be important every time you go see another specialist or new doctor in pursuit of a diagnosis – so stick them in a folder and plan to bring them along with you whenever you see someone new.
Keep a symptom diary and photo library. Autoimmune illnesses can cause a wide array of symptoms like fatigue, joint pain, muscle pain, rashes, sores, dry mouth, weight loss or gain, fever, depression, sun sensitivity, nausea, and more. Any time you notice a new little problem… higher than usual fatigue, a stiff finger, a weird fever, or just anything that’s new and bothersome, write it down in a journal. Use the journal to note when a symptom appears, what it feels or looks like, and when it goes away, and when it comes back again (if it does.) If you have a rash, a sore, or anything else that is visibly weird, take a good photo of it and tuck it in the journal. This way, you can let doctors view the rash long after it’s gone from your body.
Make sure your primary care doc is doing the right thing. A primary care doc should ask about your symptoms and order basic screening tests to get a sense of what kind of autoimmune illness you might have. Depending on the symptoms and test results, they will probably send you to a specialist for further treatment. You might go to a dermatologist for a rash, or a rheumatologist for joint pain. They should be able to name a specific doctor that they want you to see; if not, be sure to ask. Once the specialist sees you and reports back to the primary care doc about your appointment, your primary care doc should have a plan of attack (maybe send you to another specialist, or wait for 6 weeks and see what new symptoms occur, or wait 3 months and repeat the blood work, etc.).
Get educated. Don’t try and use the web to diagnose yourself. That will just make you crazy. But when your doctor uses a special term or names a possible illness you may have, go ahead and look that up on the web. Learn to speak their language, and you can have more productive appointments. You can also use the web to learn about the various tests or blood results you may have - what is test X? How is it done? What does it tell you? (For example, the Lupus Foundation of America has an excellent explanation of the ANA test and what it means when you test positive for ANA.) MedlinePlus is a great place to start.
And how can you start to cope with the new fact that you might be sick?
Ask for help with daily chores. Don’t push too hard to be perfect right now. If you are feeling unwell or are just seriously preoccupied with getting to and from doctor’s appointments and tests, ask friends and family for help. Or pay people to do things for you (like clean house, mow the lawn, or even drive you where you need to go). If doctor’s appointments are overwhelming, bring a friend or spouse along for emotional support. Or to take notes during the appointment (your friend, being less involved, may take better notes and follow the doctor’s explanations better than you can in your worried state).
Review your financial situation. Now (before a doctor has pinned a diagnosis on you) is an excellent time to check your life insurance and short- and long-term disability policies. Max out the benefits you can get through your policies…. Can you add more $ to your life insurance? Can you shorten the waiting period on your disability policies, increase the length of time benefits will be given, or change an “any occupation” policy to a “same occupation” policy? It might be worth extra $ out of pocket in premiums now, in case you need these things later on.
Get emotional support and grieve if you need to. It’s so terrifying to be healthy one day, and be told you are “sick” the next. Sick with something they can’t even name yet. Something that could be serious. And something that will almost certainly be a part of your life from now on. You may be pissed off, terrified, overwhelmed, anxious, or in denial. You may (rightly or wrongly) be imagining a future where you are too sick to do anything at all… raise kids, work, be a good spouse, etc. It’s depressing and overwhelming. And you may already be feeling isolated or different… a “sick” person walking in a healthy world that you are no longer a part of. Go ahead and grieve. Talk to friends or family about it, or read online blogs dealing with chronic illness. You aren’t the only one going through this! Also consider books like these:
Wells, Susan M. A Delicate Balance: Living Successfully with Chronic Illness. HarperCollins, July 2000.
Take time for yourself. Once a day, spend two minutes doing nothing but sitting still. How are you feeling? Does anything feel wrong, or is everything feeling well today? Note the bad in your symptom journal and celebrate the good. Eat right and exercise like you normally would. Sleep. Hug friends or pets or spouses. And every time you go to the doctor, give yourself time to compose yourself before you go back to your normal day (being at work, being at home with the kids, etc.). I used to sit in the car and cry for 20 minutes after every doctor’s visit. It’s depressing to have to go talk to people about why or how you are sick and what it’s going to do to you. If you’re a crier, give yourself time to cry. If not, do anything that puts you back in balance and helps you transition from the scary doctor’s visit back into the real world. Pray. Meditate. Have a cup of tea. Go for a short walk. Look at pictures of loved ones, or call and say hi to a friend. Sing along with the radio. The illness isn’t everything in your life. Get that sense of balance back before you head back to work.
Don’t despair. No matter how bad the diagnosis winds up being (and it may not be bad at all… you never know), you will be able to cope. Your life will go on. You will have friends, you will have work to do, you will feel happy again, and sometimes even feel perfectly healthy. You’re going to make it. Hang in there.
And call me, girl, if there’s anything I can do to help.
Comments