My #InvisibleFight: Fighting for Recognition of Chronic Illness

This year, Invisible Illness Awareness Week, which takes place from September 28 to October 4, has as its theme “My invisible fght”. I wrote for INvisible Illness Awarness Week in 2013, but skipped it in 2014, believing I didn’t qualify as someone with an invisible illness. Of course, I have a mental illness, but in my twisted mind I thought that didn’t count.

Over the years, I have been fighting to get a proper diagnosis and treatment for my chronic fatigue, irritable bowel symptoms and other random fun. Until early 2015, my syptoms were dismissed as being behavioral. What I mean by this is what I wrote yesterday: I was doing too little so I was fatigued. Never mind the other symptoms.

In February of this year, I was diagnosed with vitamin D, B12 and iron deficiencies. All were treated for some time, but eventually I was taken off all but vitamin D. This is a bit ironic, since vitamin D is the most potentially harmful of these three supplements and I have not had my vitamin D levels tested since April.

My doctor also didn’t follow the protocl for treating vitamin B12 deficiency. I had to insist on getting subcutaneous shots insead of tablets. The B12 research group in the Netherlands recommends shots, reasoning that, unless you’re strictly vegan,, you probably have a problem with absorption of vitamin B12 or you wouldn’t be deficient in it. The research group recommends starting with twice-weekly injections for five weeks followed by tapering based on symptoms, not serum B12 levels. I got the recommended five weeks of injections but they were discontinued after that.

I happen to be the odd one out where it comes to B12 deficiency, not having had a return in symptoms for about a month after the injections were stopped and having normal serum B12 levels even four months after my last shot. Though my symptoms returned, my B12 levels were normal about a month ago and the research group does not support supplementing without testing low in B12. Apparently, or so I assume, B12 deficiency wasn’t the root of my symptoms.

Does it matter what the root is? If there’s a targeted treatment, of course it does. If a simple pill or shot could help me live a normal life again, thee’s no reason not to fight for that. But I’ve now had these symptoms for so long. I’ve been on iron and B12 and now vitamin D for so long on and off with little long-term improvement. I’ve had so many blood tests and other tests that came back normal. And yet I’m still sick.

What am I fighting for, I wonder. If no treatment can cure my symptoms, isn’t it just the diagnosis, the recognition that something is wrong, that I fight for? In all honesty, I have to answer this question affirmatively. It’s not that I don’t also want treatment, but I also want to be validated. Is this normal?

in a way, it is. Most people with chronic physical health symptoms fight to be recognized as physically ill. They obviously also fight for treatment, but they also fight the stigma that is associated with the notion that they are psychologically ill. The problem is that, by wanting to be recognized as physically ill even if there is no known cause or treatment for our illness, we add to the stigma of mental illness.

Don’t get me wrong: physical symptoms need to be treated as they are, physical. Every possibility needs to be exhausted to find a cause and treatment for the symptoms. If there is none, that also doesn’t mean the cause is psychological or that psychological intervention will help. But it just might. Let’s fight for proper treatment of chronic illnesses and health problems, no matter their (presumed) roots.

Everyday Gyaan

Also linking up with #InvisibleFight at Invisible Illness Awareness Week. I will probably be writing another post on September 28 to honor the start of Invisible illness Week 2015.

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10 thoughts on “My #InvisibleFight: Fighting for Recognition of Chronic Illness

  1. I feel so sorry for people with chronic illnesses that aren’t diagnosed well and are an ongoing problem – I really hope things get sorted out for you soon.

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    1. True. The problem with the most common treatment of physical symptoms that are presumed to be psychological in nature, is that it often involves countersuggestion. In other words, people are told that they believe they are ill when they aren’t. Proper mental health treatment for psychosomatic symptoms takes the symptoms as real but teaches patients to adapt their thoughts and behaviors to deal better with the symptom. For example, pain is real but it will not go away by worrying about it so you’d better learn not to worry.

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  2. itsbhaedto live daily with a hidden chronic illness trying to get Drs and people go believe and understand you. And mental illness most certainly counts. Be brave and remain strong.

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  3. I’m sorry you are going through this and I hope you get some answers soon. I have two children with invisible illnesses, one a connective tissue disorder, the other is only 2. He has terrible gut issues and sleep problems, he can’t eat dairy, soya or wheat/gluten as well as something else we can’t figure out. Have you been tested for coeliac disease? That can cause all manner of symptoms xxx

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    1. Oh I’m so sorry about your kids’ illnesses. No, haven’t been tested for celiac disease. It was suggested to me by my psychologist way back when I first went to a gastro doctor for what is now seen as IBS. I did disclose that she’d suggested this but the doctor explained how to test for celiac but didn’t offer to test me. Either she thought I didn’t have it or she was tired of non-MDs suggesting this disease.

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