Getting Diagnosed

You’re tired, deep down in your bones exhaustion kind of tired. Sleep doesn’t help, even when you do sleep. Your body aches. Muscles or joints seem to constantly be in an angry state of inflammation. You are plagued by abdominal pain, nausea, or irritable bowel symptoms. Even your skin is unhappy, frequently breaking out in rashes, dry and flaky. If this sounds like you, chances are, you may have an autoimmune disease.

Affecting an estimated 24-50 million Americans (depending who you ask), there are more than 80 known autoimmune diseases. Many of those share symptoms, the most common of which are also common symptoms of other, less damaging conditions. This makes reaching a diagnosis a challenge for patient and doctor alike. Characterized by symptoms that come and go in very aptly named “flares”, it is easy to see why many patients suffer for years with autoimmune disease before receiving a proper diagnosis. (Sometimes decades, read The Road to Diagnosis for my diagnosis story.)

So, knowing that reaching diagnosis may be a challenge, how do you get your mystery illness diagnosed? If only there were a simple test, I certainly wish the answer were so simple, but I’m afraid the answer is hard work and persistence. If there is any hope at all of getting a name and therefore treatment for this mess you are dealing with, you will have to do some of the leg work to make it happen. Lucky for you, some of us have learned (the hard way) a few things that help move the process along!

First of all, and I really cannot stress this enough, DO NOT STOP TRYING! If there were one thing in my life I could change, it would be the number of times I walked away from the Doctor’s office without the right answer. When the treatment plan doesn’t work, GO BACK and tell them that. Don’t just give up and suffer in silence, your body is taking itself apart while you do!

If there were one thing in my life I could change, it would be the number of times I walked away from the Doctor’s office without the right answer.

Time to create the most important tool you can have when it comes to getting a proper diagnosis, a symptom journal. Your symptom journal can be a notebook, a spreadsheet, or of course, there’s an app for that. No matter where you choose to record them, keeping a daily record of your symptoms can help you and your doctor find patterns.

Be sure to include ALL of your symptoms, everything. Headaches, body pain, anything and everything that is not normal, and anything that is normal but shouldn’t be! What do I mean by that you ask? I’m saying we can get used to just about anything if it happens often enough. So, that constant nausea you’ve had for years? Write it down. The headache you get every. single. night. Write it down. If it feels bad? Write it down! If you have a chronic condition, chances are you are used to being a little uncomfortable, but your doctor will never be able to tell you why if you haven’t shared all of your symptoms.

we can get used to just about anything if it happens often enough

Next up, track down a really complete family history. When it comes to autoimmune disease, genetics definitely appears to be a big part of the picture, so finding out if anyone in your family has a history of autoimmune disease of any kind might help point your doctor in the right direction. For a complete list of autoimmune diseases check here. Adding your family history to a section of your symptom journal will keep things all in the same place.

Now that you’ve gathered all the information you can, it is time to find a doctor you can trust to help you solve this puzzle. I won’t lie to you, this is probably going to be the hardest part. Because many autoimmune symptoms are also symptoms of very common problems like lack of sleep, cold and flu, muscle strain, etc, you will need a doctor who has the time and expertise to look at the bigger picture. A doctor who sees more than the symptoms you have the day you see them. If this doesn’t sound like your primary care doctor, please find a new one!

With your doctor’s help, and possibly a blood test or two, you should see a pattern in your symptoms and family history that helps direct you to a specialist that is more apt to have the knowledge to help you. What kind of specialist you need will depend on which systems seem to be most impacted. Patients with frequent joint pain and inflammation will be best served by a rheumatologist, while those suffering from intestinal issues would be better off visiting a gastroenterologist. What symptoms do you have most frequently? Those chronic symptoms will lead you to the right type of specialist.

Finally, never stop pushing! Getting to a specialist is, sadly, no guarantee you will get an answer. You may hit dead end after dead end. DON’T GIVE UP! You are the expert on your body. You know something is wrong. I believe you. I have been you. I know it is tempting to give up and just live with it. You can. But, if it is autoimmune disease, everyday you ignore it, it tears you apart a little more. Damage is being done. Perhaps permanent damage. So get that second, third, and tenth opinion if that is what it takes to solve the puzzle and get your diagnosis. Your health is worth every medical bill or co-pay.

Have you been battling for healthcare? For my diagnosis journey read The Road to Diagnosis and Battling for Healthcare.