To My Doctors Who Don't Understand My Chronic Illness

I’m not making things up. Just because you haven’t figured out exactly what’s wrong yet doesn’t mean it’s “all in my head.”

I’m not here looking for narcotics. My pain is real. It’s debilitating. Sure, I want some relief from the pain, but I’d rather treat the cause of it than mask it with painkillers. I want it to stop. But in the absence of a cure, while we continue to try to figure out what’s going on, something to take when things are so bad that I’m curled up in the fetal position or writhing around in my bed in tears unable to sleep would be nice. It’s inhumane to not address my very real pain just because your tests are, so far, inconclusive.

 

I do not keep coming to see you because I want attention. I don’t have the money or the time for this. There’s a million places I’d rather be than in your office or hospital. There’s things I’d like – or need – to buy with this money. My family agrees with me on this. They’re tired of mommy being too tired or sick to do things with them, or missing out on things with them because of yet another doctor appointment. They’re tired of all the money going to my medical bills, too. I’d like to be healthy enough and have enough money to go on a vacation.

I’m frustrated that the people who do engage in drug-seeking behavior and the people who are attention-seeking have jaded you to the point where you don’t trust your patients, where you can’t see the ones like me sitting right in front of you who desperately need your help. I want you to see me when I’m sitting in your office. I understand the symptoms cannot be scientifically tested and all you have to go on is my subjective description of my symptoms. The symptoms are very real. But this is disputed by people who are not experiencing the symptoms, and therefore not taken seriously like something that can be measured. Those illnesses are taken seriously. Fibromyalgia is not.

That was my first diagnosis, and after a few years I got “upgraded” to mixed connective tissue disease (MCTD) when some lab tests finally started showing something was wrong. This is why you have to keep looking and not give up. Patients experience symptoms of some diseases before the tests can conclusively lead to a diagnosis. It happens all the time with MS and lupus. By the time the tests are finally proving to you what we, the patient, have been telling you all along – that something is wrong – irreversible damage may have already been done. To our body. To our pride. To our trust in you.

Some people don’t believe that MCTD is a “real” diagnosis either, although it seems to be taken a little more seriously than fibromyalgia. I understand that MCTD could possibly be the early stages of a variety of autoimmune diseases, and can have a wide range of symptoms from various disorders such as lupus, scleroderma, myositis, Sjogren’s and rheumatoid arthritis. In my case, specific antibody markers are negative, although my ANA is positive, and other labs are “off,” such as inflammatory markers. But a few years ago, these same labs were normal, but symptoms were present.

As the symptoms have continued to worsen, so have these tests. If it continues to progress as it has been, my diagnosis may change again as my disease progresses. Certain specialists may understand this, but when I’m in the middle of a flare-up, when I’m in a lot of pain and in need of medical attention right now, specialists are not the ones I go to. Urgent Care clinics, emergency rooms and primary care physicians are not equipped to handle “vague” symptoms.

It’s even worse when the symptoms change so often, as is the case with MCTD. Today I might be fine. Tomorrow I might be in a huge amount of pain. Next time you see me I might be so weak I can barely walk or get up out of a chair. Or I could be so mentally out of it from the brain fog that I can’t remember very much. Next visit I might tell you about the new book I’m writing. I’ve had times I couldn’t say the right words, times when I couldn’t see well enough to drive or to read. Then my eyesight comes back. My cognition clears up. So trust me, I understand from your point of view how all of this could seem suspicious. One day I’m writing a book, the next I can’t remember what day it is? One day I’m so weak I can’t walk, then the next visit I tell you about doing a marathon over the weekend? I tell you I’m in too much pain to go to work, but then a few days later I’m outside mowing my lawn? I’m in the medical field, too, and I’ve seen the same things you have with people being dishonest.

I’d question me, too, I suppose. However, that doesn’t change the fact that a real person with a real need is sitting right in front of you asking for help, and when you refuse to treat me and send me away, telling me to follow up with my specialist, I feel invalidated and unheard. I’m not getting treated with dignity and respect, and I usually have no choice at that point but to go home and curl up into bed and cry in pain until this latest flare passes and I can try to resume some semblance of a normal life again for a few days while I wait for the next flare to hit.

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Thinkstock photo via Digital Vision.