Archive for the ‘illness’ Tag

The Medical Response to my Autoimmune disease   Leave a comment

This blog was recently published on The Mighty website.

 

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 twenty 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 months-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 out the money I spent, of course.

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 had 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, but that 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.

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Posted September 10, 2018 by swanatbagend in health

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What Can It Do?   2 comments

How does the church respond to members of the body who live with chronic illness or disability?

How could it respond?

It’s a hard question to answer, because it is hard for anyone to know how to deal with chronic situations, that by definition are not going to go away, that may or may not get better.

In some ways, a crisis is more straightforward.  It can get a response from the body, because a straightforward response can be given.  If someone is in the hospital, very ill, or in an accident, obvious needs can be met — childcare, food, logistics, yard work, cleaning — all these areas can be picked up by other capable hands.

If someone has a serious illness, prayer is offered.  Healing is desired.  Often, it’s expected.  And practical help in the way of food and mowing the grass can be arranged.

If someone’s parent, spouse or child has died, practical help and comfort can be given.  If there’s divorce, an accident, a fire, a surgery, food is always good, and a listening ear helpful.

It gets messier and more confusing when there is no end in sight.  And that’s understandable.

If a person lives day in and day out in a wheelchair, or with chronic pain, or has a disease that is understood not to be curable, the situation becomes different, for several reasons.  A child with a disability, health problems that don’t resolve, ongoing financial problems, care-giving for a spouse or aging parent–these are all situations that won’t go away in a month or two.

I think the reason this is harder to address is because people love to help, but they would like to feel they brought about a solution.  They like results.

I don’t blame them.  We all want results.

The other reason is that chronic situations can become invisible.  The member of the body has to face the reality of the situation and find a way to go forward and live life.  They often do this so beautifully and bravely, learning through the trials to “keep on keeping on,” that the struggle they face may no longer be obvious.  They learn to cope, they find resources, they come up with a way to live or they die trying.  So, others walking alongside the person may not necessarily see the “thorn in the flesh.”

Honestly, those in chronic situations know these challenges are their own responsibilities.  They know nobody is going to be able to be able to waltz in with a casserole and fix the problem.  And they know that other people are understandably able to give them only so much.  Just because a person’s baby is born with Down’s syndrome doesn’t mean that person gets meals delivered every day for the rest of the child’s life.  It doesn’t work that way.

Yet–should the church ignore the struggle?

No.

Of course not.  While tempering its response with the known reality, that unless God intervenes the situation is not going away, the church can offer love in a practical way–the same kind of love it would offer in an acute one.

Affirmation.  Prayer.  Encouragement.  Food.  Help with yard work, house work, errands, or childcare for other children.  All of these gifts can be given to one whose disease is probably not going to be cured, to one whose difficult situation is not going to just evaporate.

The body cannot minister as intensely in a situation that is chronic–but it can minister.

The circumstances will be different, but the love can be the same.

Posted September 16, 2015 by swanatbagend in the church

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