AnxietyFilter: How do I psychologically deal with a potentially unknown chronic ailment?
September 1, 2009 10:08 PM   Subscribe

AnxietyFilter: How do I psychologically deal with a so-far undiagnosable chronic ailment?

I have read through and examined several books on meditation type techniques, mindfulness, ACT, CBT, and seen 4 therapists so far in the last year (which really, when you're looking for somebody that's a good match for you, I suppose, is not that many). Some of the information was useful, but a lot does not seem pertinent to my situation.

I have a lengthy medical history, but not a whole lot in the psych area. I am pretty positive having to deal with a lot of the medical stuff is what landed me in the anxiety boat, although not entirely. I had a lot of success previously with acupuncture & biofeedback, but now it's ratcheted up to the point where I feel like those are just tiny band-aids.

I have found a good psychiatrist who has prescribed a variety of things I can try, and I will of course follow her directions, but I am looking for some kind of guide in this area, specifically.

I mean, sure, I know changing things about my lifestyle if they are unhealthy, eating differently, or doing more/different exercise, changing jobs, volunteering, etc can help. I've always been big into exercise and eating right. But the nature of this problem makes it difficult to do a bunch of the things I love doing - which some doctors might recommend, like tai chi or yoga, or ballroom dancing :) - and it is extremely frustrating. This thing impacts my breathing (even if I'm not anxious, taking a deep breath is difficult). Many days I have felt like crying, or have, sometimes several times a day.

This has been going on for over 6 months now and the longer it persists, the more I feel like I'm just spinning my wheels waiting for something to help me get going doing the things I love again. At least one diagnostic test has shown they can clearly see that there's a problem, but have no idea what's causing it.

I was on Zoloft a couple years ago, and it helped me a bunch with getting over all the previous medical things I mentioned I've got, but even without it, I was doing reasonably ok because I knew how to deal with the things I had. Recently after being fed up with the results from local docs, I went to the Mayo Clinic in Arizona, and after a full week of tests and appointments they didn't come up with anything much different from the people where I live. (which is a whole nother thread in and of itself, but I'm not going to talk about that here so as to stay on topic).

Anyway. It's a bunch of stuff I'm dealing with here, and feel like I am just running out of any good way to cope. I am single and often feel pretty alone even though some of my friends are great, I don't really "come home" to anyone. (Sorry a dog is out, at the moment). I do go out and am not agoraphobic; I participate in social events even though I really don't want to (I'm often invited and not proactive about it at all anymore because I don't like how I look with all the weight I've lost). I still have a full time job, which I'm bored of but at least pays my health insurance.

I could join a support group, but which one? Unknown ailment support?

How do you handle something that impacts you so severely but nobody seems to have an answer for?
posted by anonymous to Health & Fitness (11 answers total) 10 users marked this as a favorite
What does the test indicate? Something autoimmune? You don't have to tell me, but there might, in fact, be a support group for that. Or, possibly, something like chronic fatigue syndrome might fit a lot of your symptoms so you could find support there even if that's not a diagnosis you've been given. No need to fake it, of course, just let them know you don't have a diagnosis.

I have mixed connective tissue disorder and I have gotten some support from an SLE group because the conditions are closely related with some of the same symptoms.
posted by kathrineg at 10:24 PM on September 1, 2009

As someone who spent 22 years of my life undiagnosed, misdiagnosed, and miserable with something no one seemed to know about until I got lucky, I will try to help as much as I can. I understand the anxiety, the lack of control and the ... misery.

One. The one thing that has pretty much saved my sanity, even after learning what was wrong, was to simply say, for all things that come to me, "Well, it will work out. Maybe not right, or well, or how I want it to, but in the end, things always work out." And this is true. Some people have told me this is negative, but I view it as a very positive outlook on life.

Two. Accept that medical science is, at its core, not very old. However, it does learn very quickly, and often in very unpredictable ways. For example, the condition I have has no real understood cause, and better yet, the drug they give for it usually isn't even understood completely in how it works to treat the condition. And it doesn't treat it completely.

Three. Centering yourself helps. When things feel bad, when you are frustrated and at your wits end, it is completely ok to shut out everything but yourself and spend a few hours (or days even) to decompress and find your center. I usually do it by staying at home, in bed mostly, or in my office, curled up with my eyes closed, or no lights on, with no stimuli what so ever. I then run through some very basic meditations, primarily on breathing and body awareness. I do this for however long it takes to bring myself back to calmness.

Four. Meditation practices. The key here is pick one set of practices and stick with it. I do Soto Zen meditation, but I have also done several forms of Yoga. I find picking one set of regular meditations to do at least once a week helps with both anxiety and health in general.

Five. Accept that, no matter how well you do everything you are told to do, how much you take care of yourself mentally and physically, YOU WILL GET OVERWHELMED sometimes by the anxiety and by life in general. It is OK. See point three.

I hope this helps, and I hope that you get answers soon.
posted by strixus at 10:28 PM on September 1, 2009 [13 favorites]

This has been going on for over 6 months now and the longer it persists, the more I feel like I'm just spinning my wheels waiting for something to help me get going doing the things I love again.

Well, IANAT, but this sort of screams some variety of depression to me. There are as many kinds of depression as there are depressed people. Without knowing your medical history - and even then IAMAD, but it seems like if you enjoy doing things like, say, yoga - things you know are good for you - but find it difficult to do them, in my experience that's depression (coming from someone who loves doing yoga among other things but finds it hard to do it, because, well, depression).

External factors aside - lack of an SO (love is hard to find, and won't solve all your problem s (and in fact will probably bring you a slew of new ones)), boring job (join the legion of contemporary adulthood) - the only advice I can give you is 1) talk to your therapist - which you are doing; 2) consider medication. Lots of folks on askme will tell you that zoloft is child's play, and that finding the right drug combination that works for you takes time and experimentation. I'm not advocating it for everyone, IANAT, but anti-depressants saved my life. And zoloft is not necessarily the best anti-anxiety drug. Everyone is different.

Feel better. Life is tough. You're not alone.
posted by Lutoslawski at 10:38 PM on September 1, 2009

You could would work on psychologically dismantling your anxiety with focus. Focus during the times you are feeling good and deconstruct what forces are making you feel this way, both physically and mentally. Also do this when you are not feeling at your best to better isolate what it is that is bothering you. Try to understand the core of what is making you feel anxious. Once you have isolated particular reasons for your anxiety you can plan your attack against them by thinking of practical behavioral solutions.

Remember that perspective is key.

You don't know exactly what is happening to you, but you will want to have lived your life without regret by taking advantage of every moment no matter what.
posted by pwally at 10:44 PM on September 1, 2009

Sometimes keeping a diary of where you've been, what you've eaten and how you feel helps a doctor (or you if the doc is uninterested) see the bigger picture. Once you see a pattern, approach your doctor(s). Now, if the doc gives you the brush off, look on the net, avoiding all sites which promise cure-alls. I have MCS - that's Multiple Chemical Sensitivity- which is viewed as some as related to Gulf War Syndrom (turned out to be chemical poisoning) or total nonsense. I've been told I have hysteria (remember your Greek), psychosomatic disorder, or untreatable allergy/sensitivity to benzene and phenol and their compounds. The last one is correct; the other two are catch all diagnoses for "I don't know." and "All women over 40 are trouble." There are info/support groups for MCS, some with solid practical info and some full of people who are so sick they cannot cope with life at all and sound irrational. Having been that sick, I understand, but it is disconcerting. On my way to diagnosis, I did see an autoimmune specialist who ran a battery of tests to rule things out. Luckily, I don't have that to cope with. And, I found an enviromental medicine doctor and an allergist who treasts people like me. And all sorts of quacks wanting $$ for a 'cure' and a few docs who thought handing out prescriptions for SSRIs, to which I am sensitive, were the solution, and psychiatrists who could/would not accept that there could possibly be a physical component to my problem.

The reason I'm telling you this is that it may take some digging, fortitude, and doctor shopping to find someone who will look at your diary and research. The CDC and WHO sites sometimes have useful, reliable, conservative information on odd conditions. That said, a friend of mine was saved by having the good luck to land in London with an undiagnosed tropical disease that was on the point of killing him. He'd had it for months, but the doctors where he lived were unfamiliar with tropical medicine so could not figure out what was wrong with him. Not saying you have anything exotic, just that you should remember that docs are human and that you know your body better than anyone. I've found that doctors tend to look in areas where they are comfortable, not necessarily where it counts. Keeping track of all your symptoms and when they occur can help with diagnosis. I am surprised that the Mayo Clinic had no better results for you.
posted by x46 at 3:12 AM on September 2, 2009

Not being able to take a deep breath isn't helping you to relax, but the biggest problem is simply not knowing what's wrong. People are able to get used to even horrible diagnoses and be happy again, once they know the worst. You don't know what you have or when you'll get better. That makes the situation much more difficult to come to terms with.

My own illness began five years ago. I gradually lost the strength to do what I needed to do. My endocrinologist ran all sorts of unpleasant tests, which ended up showing nothing except that my cortisol levels were sky-high as the result of the physical stress of doing more than I was able to manage. After things got bad enough that my doctor sent me to the hospital, a neurologist told me the tests showed I had subclinical myopathy, but had no answer when I asked what could be subclinical about not being able to walk! The diagnosis I received on discharge from the hospital was ludicrous; they told me I'd be all better once they got my potassium levels up to normal, which turned out not to be true at all. Another neurologist did an excruciatingly painful deep muscle biopsy without anesthesia, then told me, weeks later, that the results did not show anything. A third neurologist offered antidepressants, although I was not depressed. A fourth one eventually told me that his best guess that I had been born with a minor muscle problem, one that normally did not cause problems, then hit that summer by a mysterious virus, one that might not have affected a person with normal muscle. He advised me to try some nutritional supplements that are supposed to help mitochondrial problems, prescribed a muscle relaxant for the cramps, and that was the end of what he could do. No real diagnosis and no cure.

What I did was keep in mind that most illnesses get better, even if the doctor doesn't know what you have. Things usually do improve. I had to accept that my situation was as it was, and then do what I could to live with it. I did what work I could do, while lying in bed with my keyboard on my lap and my monitor on an over-bed table (like they have in the hospital). I got a power wheelchair so that I could go out by myself more easily, since I couldn't walk far enough or sit in a waiting room chair long enough to go to the doctor without it. I started going to a doctor who specialized in chronic fatigue syndrome; she gave me lots of placebos, but more importantly understood what was going on. She did not know the cause of my problems, but she'd seen many patients with similar effects on their lives. She wasn't shocked by my incapacity whenever she saw me, as my old doctor had been.

I am not all better now, but I'm a lot better than I was. I can walk over a mile now, if I'm careful; five years ago, I could walk only ten feet. I can cook, and I can harangue my kids as needed. A physical therapist showed me stretches that reduce my pain level. I still can't work at a job, but my hobby website gives me some income and interaction with people. When I feel very bad, there are always good books to read to take me away from it. My family has been wonderful.

The interesting thing is that, most of the time, I have been just as happy and have had no more or fewer things in the worry space in my head than before. There is always some problem in every life. Whatever problems you have inevitably expand to fill the space available, so the overall impact is pretty similar, assuming you're not in danger of losing your home or something. It's like the studies that show that people who win the lottery are very happy at first, but within a year are right back at their previous level of happiness. Having a big problem does not require that you be more upset about it than you were once about smaller problems, once you can name your problem and accept it as normal. It is possible to lead a good life, even if you don't have a useful diagnosis and can't do what you used to be able to do.
posted by Ery at 6:21 AM on September 2, 2009 [1 favorite]

If we want to avoid being hit by a train, we don't stand around on train tracks. Similarly, if you want something good to happen, it helps to be where those things are more likely to happen, rather than back on those train tracks! The only constant any of us can depend on (short of gravity and the sun coming up daily) is change, and we can take advantage of it by prepositioning ourselves as such.

Fundamentally that means the solution to your problem, and/or how to live with it, is a function of your creativity: how well can you position yourself? Hammer on that and continue to hammer away at new ideas, methods, knowledge, mood, etc. until you can't stand it anymore, and then keep at it just because you should. The world is at your fingertips, just waiting for you to tap it in your own, unique way.

That's why I chose to live when I was ready to die: stubborn, unbeatable, hope.
posted by jwells at 6:33 AM on September 2, 2009

Count me in as another like-you person -- chronic ailment, batteries of tests, went to a hospital with a sky-high reputation to try and figure things out, ending up back where I started diagnosis-wise, and told to suck it up if tylenol doesn't work. (Still a little bitter about that last one.)

It's hard. You know that, I know that, your therapists have known that, everyone knows that. Are you going to therapists who specialize in chronically ill patients? You might want to ask your doctor for referrals to specialists in that area; I'd imagine it makes things different in terms of their ability to help you in your specific situation.

Honestly, I've gotten to the point that the label of the illness isn't really what matters here, but continuing to move along some life path or another is the way that comes with the least anxiety about illness stuff, even though it can be more stressful. I'm least happy when I'm stagnating, and it sounds like that's where you are right now.

Sorry I can't offer more concrete help; you and I are stuck in a group of people for whom there are no easy answers. If you want to talk more about this kind of stuff, send me a memail -- I like making friends.
posted by mismatched at 9:22 AM on September 2, 2009 [1 favorite]

Unfortunately, in our country if your illness is not diagnosable via diagnostic tests you are left to twist in the wind and/or given the mental diagnosis. I feel for I have/had a very similar situation.
I never did get a diagnosis (aside from Chronic Fatigue Syndrome--which everyone laughed at)..but it was many years ago and I survived.
You are right to consider searching for a good therapist. You can't go wrong with sharing your feelings about your health with someone. If you DWELL on your health you may fall into a victim mentality thing...not good.
Make sure your nutritional needs are being met. Skip hanging out with other sick people. They usually just carp about how sick they are.
posted by naplesyellow at 9:34 AM on September 2, 2009

I've been in this situation myself--multi-year chronic viral infection that was like having a really, really bad case of flu or mono that lasted for years--and working with an integrative medicine clinic helped a lot. If that's an option for you, I recommend it.

As for seeking therapy, you're dealing with grief and anxiety issues that have an exogenous source--the stress and trauma of chronic illness. So perhaps finding therapists who are used to working with chronically ill patients, and/or a support group for people experiencing chronic illness, are good options?

Pain management clinics are often good sources for referrals to therapists and others with experience in working with folks experiencing chronic illnesses.
posted by Sidhedevil at 10:40 AM on September 2, 2009 [2 favorites]

I've had a chronic untreatable condition for about 5 years. There's a lot of good advice in this thread and the treatment of chronic conditions almost always requires a multi-pronged approach. I'm just here to say that meditation has made a bigger difference for me than I ever imagined possible - both in dealing with the condition, and in actually improving it (never expected that to happen). It takes a LOT of dedication, steadiness, practice... and it can be hard to do alone. But if you get a group, commit to a schedule, take lessons, do retreats... I'm SURE it will help you somehow. I don't know just how but I really do think it would make a difference. I can give you LOTS of information - feel free to message me.
posted by Cygnet at 11:12 AM on September 2, 2009 [1 favorite]

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