Saturday, January 28, 2012

Hypochondria

From http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002216/:

"Hypochondria is a belief that physical symptoms are signs of a serious illness, even when there is no medical evidence to support the presence of an illness."


When I was younger, a lot of my friends believed I was a hypochondriac. What I remember from that is withdrawing emotionally from the people around me even further because my body was hurting, I was getting weird rashes, I felt sick, had chronic headaches and Kaiser wasn't giving me answers or even the slightest bit of actual help and I felt like even my friends didn't believe in me. Recent discussions with an old friend have reminded me of the wild and random possibilities I was coming up with on my own. No wonder they thought I was a hypochondriac, I'm thinking now. He says they didn't love me any less for it.

Later, after my first child was born, I knew an amazingly high level of health that I hadn't known before. I could even eat ice cream without my lactose intolerance becoming an issue. I got really good at yoga, was eating really well, had another baby... Second baby's pregnancy brought back the lactose intolerance with a vengeance. Second baby was high needs, very colicky, screamed on a schedule, threw up consistently. I kept up my health, did yoga, ate carefully as I was breastfeeding the high needs baby. After a while my confidence in my health grew: I purchased running shoes, started bouldering at a local rock gym, considered yoga teacher training... I had high aspirations.

Then my health faltered and the sporadic episodes of muscle weakness, absence seizures, digestive issues, rashes, etc became more and more frequent. I was diagnosed with Hashimoto's thyroiditis by one doctor. A neurologist became convinced that I had Multiple Sclerosis and it all came down to a $2500 test while I was uninsured that I still haven't had done. I was begging & borrowing money from anyone who could help me get medical care. My lactose intolerance keeps increasing. A couple years ago I did an allergen-elimination diet and discovered my gluten-intolerance. (It has made a WORLD of difference to be gluten-free!!) Over the years I have had many people suggest many possibilities. When I bring these things up to the doctors, most often I get that familiar "you're a hypochondriac" glare. I hate that. It causes me to emotionally withdraw and be angry at myself, even now.

When I look back now at photos and videos of myself, I see my sickness. But now I can see what was going on a lot better. Food intolerances, too much caffeine and really bad eating habits on a vegetarian diet were causing a lot of my problems. The bloating, acne, digestive issues, candida rashes and fatigue were all heavily related to my diet. Most medical doctors do not pay attention to diet and exercise habits. At least, not so much in 1995. I am seeing more diet and exercise awareness among doctors now. I'm even seeing natural therapies and supplements being used more frequently by doctors in dealing with these sorts of issues as well as in the mental health field. The chronic headaches? I had strabismus my entire life and it was not corrected until I got my first pair of pie wedge glasses at 18. Later, an ophthalmologist helped me see the progression of the strabismus in a series of childhood photos of myself. The first noticeable point is about my 2nd grade year. He also performed a successful surgery on my eyes at Oakland Children's Hospital in January of 2002. Now, 10 years after that surgery, the strabismus is coming back. Fun.

Recently my health has gone downhill fast. I was hospitalized last May when my right leg muscle weakness and pain included my ankle and foot muscles becoming unresponsive. They could be moved, I had sensation, I just couldn't control my ankle or foot. While I was in the hospital I experienced a weird domino effect where the longer I was there, denied access to my kids, lacking outside air, suffering not just terrible but extremely inadequate hospital "food", the more pain meds I needed and the more desperate and pathetic I became. I watched a major car accident happen on the street below, I curled up in the enormous hospital bed and cried. The doctors decided somehow that my problems were entirely psychiatric despite evidence on the full spine MRI that I do in fact have spinal stenosis, spinal arthritis and that the muscle weakness and control issues were coming from some sort of inflammation in my lumbar spine area that was/is constricting the nerves at the base of my spinal cord. (I found this out later.) My psychiatric problems were only from the treatment I was getting there. They discharged me early, canceling other tests, leaving me to go home without any real follow up support for months. Damn, you know, I really do wish I was making this up. I've even considered trying the antidepressants.

A lot of people who are plagued with autoimmune disorders experience the same kinds of things and progressions that I have been through. My mom is one of them. In fact, the thyroid problems run in my family. It's hard, because a lot of people don't understand autoimmune disease still. Hashimoto's thyroiditis is an autoimmune disease. So is Multiple Sclerosis. Often when a person has one, like Diabetes, they have or are susceptible to having others.

So, here's my advice:

Do you have a friend who you feel may be a hypochondriac? Take some time to listen to them. Find out what's actually going on, what they are doing about it and find ways to help. Support your friend's efforts to improve their diet, exercise, find doctors who listen, and take care of their well-being. Educate yourself. Be open-minded. And, if you aren't a doctor, remember you aren't a doctor. (Also, don't assume your friend has what you have, and don't get aggressive with an unofficial diagnosis if you aren't a doctor.)

Do you feel sick? Sluggish, tired, headaches, migraines, digestive problems, unexplained rashes, chronic yeast infections? Talk to your doctor about diet related issues. See a gastroenterologist if you can. Don't go gluten-free first if you can get a celiac test. If they won't listen or help, try the allergy elimination diet. Get help from a naturopathic doctor if you can. Educate yourself. Exercise if you can. Yoga is really a great starting point in improving your physical health. If you have spinal stenosis or some sort of spine issue, please don't start a yoga practice without guidance from a physical therapist, however.

Your health is highly effected by your mood levels, depression, stress, anxiety, etc. When my life is going well, I naturally feel better and more capable of handling what life hands me. When I feel trapped, uncared for, scared, etc, my pain increases and I feel a lot worse. Scientists have done studies on body chemistry to support why this happens. It's no mystery that my emotional state was likely to make my physical state worse while I was hospitalized. Step back for a moment and really look inside yourself. Are you happy with this life you are living? What can you change? What needs to be changed? Do you need more fresh air? Do you need to pursue the career that really calls to you? Are you in a relationship that doesn't feel right? Are you being honest with yourself? Sometimes when a doctor tells you "It's just stress. reduce stress." what they don't know they're really trying to say is "What is your body trying to tell you? Take some time for you and figure this out."

Right now I am transitioning to a new team of doctors following my move to Oakland. So far I have been impressed with the compassion and level of care I am receiving at this new clinic. They've taken me seriously, performed tests that should have been done routinely over the last 5 years, educated me on what is going on with me and what warning signs to look for and have referred me to very good outside specialists. And I'm only on Medi-Cal. I'm not used to being treated well by Medi-Cal doctors. Only one of my kids' pediatricians has caused me to be a bit skeptical and the waits for services can sometimes be long. They recently have helped me cope with new symptoms very quickly and thoroughly and they are incredibly patient with my usually slow and awkward walking. I'm not a hypochondriac and I can't wait to get closer to that amazing level of health that I once was at. At least being able to do yoga again would be amazing. I also have a therapist for the first time in my life, also amazingly covered by Medi-Cal, who really helps me look at my life positively, find solutions, and supports me in my journey even when I am telling her all the stuff I am scared to tell anyone else.

So, if you're sick, keep trying to get the level of care you deserve, it is out there. Explore all avenues of help. Confront unsupportive friends. Work on your diet, exercise, emotional & mental health and be your own advocate. Don't be afraid to stick up for yourself.

Also, I forgive my friends for the hypochondria label. I get where they were coming from.

2 comments:

  1. Sweetie, I wish you luck and blessings to finally figure out what you are dealing with. I went through the constant "hypochondriac" fights with Dr.s while my sister was in the hospital, and later with my mother too. When we FINALLY got diagnosed it was a blessing. We KNOW from genetics and test that I have AIP like they do. But mine is handled better due to that knowledge. BUT, AIP is also one of those diseases that Dr.s still almost don't believe in until they've seen someone die from it. I had an ER visit for a migraine headache in December. And the Dr.s were getting annoyed that I kept asking them to check that the drugs they were giving me were Porphyria safe. It's maddening. I truly feel what you are going through. HUGS.

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    1. Thank you for saying something. I am really trying to stay aware of my other friends who are dealing with crazy medical issues too. We've gotta band together and support each other. Hugs & Love.

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