The Problematic Way Doctors Are Responding to My Autoimmune Disease


The main cause of the current medical response to my autoimmune disease, which is not exactly the fault of the medical professionals who are working with me, is that there is still so much we don’t know. There are factors at play in the bodies of many people with autoimmune disease that haven’t been discovered yet.

What I would like, aside from feeling better, is an acknowledgment of this fact.

When you have been in the treatment process long enough, sometimes that is all you can expect and all you want. I have received this kind of  treatment at times, and my wish is that every patient would receive this  kind of care. When I find this kind of respect, I stay with that doctor.

However, most of the time, the medical response that I’ve received over the past 20 years is some variation of this, “Your lab work is fine. Therefore, you are fine.” There is rarely awareness that lab values don’t tell the whole story.

The medical response to my autoimmune disease and the symptoms that go along with it often depends on where I am in my relationship with the current doctor. At first, the physician is attentive, involved and above all, confident that she can fix my problem and get me feeling better.

As the months or years go by, she is still concerned – but what happens eventually? Once the professional has tried every treatment she knows to fix the problem, that’s when my problem changes. Then I don’t have the problem, because she has fixed it for me. Now, if I’m depressed,  fatigued, anxious and not sleeping well, it’s because I am a mother of three children, and we all know that having children just makes you tired.

The medical response has included five or six special diets and several medication and supplement protocols intended to eliminate the root causes of my autoimmune disease. I don’t deny that there are systems in my body which are not working optimally; in fact I have no doubt of it. Unfortunately, what has been tried has not been enough to resolve the problem.

What is hard is working in a month-long process of fully implementing the diet, the supplements, the tests, the lifestyle choices and the medications, only to find that the side effects of the process cause me to feel worse than before. Once I get off the regimen, I am right back where I started. Thankfully, most of the time, although not all of the time, the side effects go away once I stop the protocol or regimen or diet. I am just out the money I spent.

So, the medical response to my autoimmune disease, while well-intentioned and logically backed, does not actually fully fix my problem.

I know that the treatments and regimens I have tried have helped many other people. I agree with the research my doctor and I review when we  make choices about the next thing to try. I know that eating Paleo is good for you and most people feel great off grains. I don’t, even when I’m off grains and sugars for months. There must be other factors at play that are causing the treatments I’ve tried to not work. But no doctor or lab tests have ever been able to pin them down.

It’s discouraging.

The net effect of the usual response adds to the struggle instead of taking away from it, because if the doctor has done all he can, there  must be something wrong with me. If the diet didn’t help me, I must not have tried hard enough. I should have kept adding more supplements. Perhaps I was not fully compliant with the diet. Maybe I just needed to relax.

In this journey, respectful treatment goes a long way. I saw an ophthalmologist twice, after seeing my regular optometrist for repeated eye redness that started after I had a bad winter virus, the kind that causes headaches, fever and light sensitivity. Between the two of them we tried antibacterial eye drops, antiviral eye drops, steroid  drops, tea tree wipes and plain eye wipes. One of them said that eyelash mites were the problem; the other said they weren’t.

I went to the ophthalmologist to follow up. When it came down to it, he told me he could refer me to another specialist. In his opinion, the redness was an autoimmune inflammation that could not be fixed. He did not know why. And he did not have any other ideas.

That is what I needed to know – not other ideas that weren’t really related, not excuses for why the treatments weren’t effective, not fairy tales about how if I just tried one more prescription, it would be fixed.

There’s not much satisfaction in not getting better. But there is a sort of joy that comes from being treated with honesty and respect.

Getty Image by gzorgz


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