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.