A lucky few get a chronic illness diagnosis quickly and easily. For most it’s a long and difficult road. Along the way, you might wonder if you’re being self-indulgent. Maybe you even question your sanity. It’s easy to think that others do, too.
I spent several years living with painful but vague symptoms. I went through numerous and often painful tests searching for a diagnosis. Each negative test result led me to question myself. Maybe this is in my head? Maybe I’m hypochondriac? (If you’re wondering this, check out this list: 10 Signs You’re A Hypochondriac)
Finally “objective proof” that I had multiple sclerosis showed up on a milogram (the gold standard 30 years ago). I was delighted to have the confirmation!
I was 30 years old, had been bedridden for months, had a bladder that was becoming increasingly useless and had lost vision in an eye. Yet I needed some dye in my bones to assure me that I wasn’t faking it. This memory makes me sad.
Chronic illness is a slippery thing. Symptoms are typically invisible, come and go, and can get better and worse with no predictability. It’s hard to identify what you can and can’t do at any given moment. Clearly, a lack of diagnosis makes this even worse.
And all this gets even messier when a person is unhappy at work. I’ve had people ask me if I think they’re making this up to get out of work.
My response is to ask if they think this? I haven’t a clue but they’re clearly concerned. Bottom line, diagnosis or not, it’s easy to convince yourself that the problem is in your head.
That’s why it seems to me that the only thing that can do about this is to take charge of your thoughts and behavior in response to symptoms. Oh, and did I say that this takes lots of work, practice and time?
How is this going for you?
Emily says
Having suffered from undiagnosed cancer for 4 years, I had convinced myself I was a hypochondriac because the physicians intimated I was overly concerned about my health. Once the cancer got so large it was obvious there was a problem I got a diagnosis, but I had to fight for it.
There has to be some balance between an instinctive gut level knowledge that “something” is not right, and an obsessive need to see a physician. I don’t think the physician always makes the correct judgement because in managed care there is a profit motivation to NOT see a patient.
I also think there is a bias or “tradition” in medicine to disregard concerns of female patients. Why I don’t know, I believe it is an old bias from the days when women were felt to be “hysterical” because we had hormonal cycles.
Thanks for the thought provoking post!
Rosalind says
Four years is a long time to wait. I’m glad that you finally got the treatment you needed and hope that you are better now.
Michelle says
I don’t know what the stats are on true hypochondria – but I tend to believe that there are few people who actually have that issue. Personally, I don’t think anyone has an illness in their head. If you don’t feel well – you don’t feel well and there’s a good reason for it. Granted there could be literally thousands of reasons why someone doesn’t feel well – ranging from something as simple as what they are eating to something as complex as cancer. Regardless, just concluding it is in someone’s head is a total cop out that far too many health care providers use simply because it is too hard to find the answer. Anyone suffering needs to stay strong and keep pushing until they get relief.
It sounds pretty crazy to be “delighted” when you get a major diagnosis like MS. But, I completely understand! I know I celebrated when I was diagnosed with Sjogrens because it finally answered why I was always so tired. That still didn’t stop others from assuming that I didn’t sleep well or wasn’t taking care of myself – but finally I knew what was wrong. Even with a list of confirmed diagnoses and the tests to prove it I still have people question me as though I am making things up. But, that is more their problem than mine. Some people just can’t believe what they don’t experience themselves, and those people are quite lucky to have the luxury of that ignorance.
Rosalind says
There is a body of work that shows that there are people who do “imagine” that they are ill — it is a serious condition and is treated as such. Thanks for your thoughts on this.
Mary says
I think being hypochondriac/health anxiety is a real issue. But I have found, more than once, that doctors who could not interpret my symptoms easily used “take charge of your thoughts” as a way to pressure me into giving up.
Just a year ago, my average daily pain level suddenly shot up from 3 to 7. Pain interfered with sleep, work and social life, and I nearly lost my job. But, since I was a chronic pain patient already, I was promptly routed into cognitive-behavioral therapy. I was told, by various doctors, “you worry too much” and “it is not clear what the cause of the pain is, but it is definitely not life-threatening”.
Granted, the symptoms were very complicated and confusing. But after 9 months of trying I found a physical therapist who took my complaints at a face value, diagnosed the problem, applied some hands-on treatment – and got my pain level back to around 4 within a month, allowing me come back to normal work and exercise.
I am very glad that I persevered. But I found it really difficult to keep going at times, precisely because doctors told me that it is bad to worry about my symptoms, bad to keep coming back asking for more tests, bad to worry about having an undiagnosed disease.
This was the worst, but I had similar experience before trying to get treatment for pain which wasn’t easily diagnosable with X-rays (and which again was successfully treated, eventually). It is a difficult line to draw, deciding when to keep going when symptoms don’t easily fit a single condition, and may well just be general chronic pain. Still, in my experience so far is that trusting my gut is the right thing to do, and I have to fight very hard from doctors making me believe that it’s all in my head because they don’t see the diagnosis yet.
Lana says
My diagnosis took nearly ten years and I did question my own sanity. After all, my doctors did as did some family members. It is sad that your condition got as bad as it did but because I have been there, I can relate. No unpredictability makes coworkers and others in your life question you. You have so much around you to make you get to the belief that you don’t want to believe yourself. The take charge part is something we learn over time.
Rosalind says
Emily- You’re probably right about the bias – although I’m not sure it’s true of the “younger” folks in healthcare. Bottom line is that it’s not always easy to make a solid diagnosis nor is it easy for us to trust that there really is something not right.
Jason Reid says
Sometimes I wonder how harshly we all judge people. I think in our society we tend to view anyone who complains about pains or illness we can’t see, as lazy or a hypochondriac.
I find this particularly acute when it comes to people who get disability payments and other government money. So many people I know think that 90 per cent of the people getting these payments are faking or exaggerating their illness
We all have an idea in our minds about how many people fake or exaggerate illness, but how accurate can that assumption be? How do we tell? We can’t magically transport into someone else’s body and feel what they feel. If an illness hasn’t been diagnosed yet, does that mean it doesn’t exist?
It’s a thorny problem. As for me, whenever pain starts to interfere with my life, I remind myself of a time when I ignored my pain only to find out I was ignoring something serious. If it’s bad enough to get in they way of what I’m doing, I need to at least acknowledge it to myself – then decide where to go from there.
Heidi Moore says
Rosalind–
This piece really spoke to me. I spent about ten years of “hypochondriasm” before my disease was diagnosed. Every time I had a new symptom, another wave of panic would come because I would have to go and face another doubting doctor. The only person who believed me was my psychiatrist.
Rosalind says
Jason – it’s so true that people make all sorts of assumptoins. Many doctors, especially in the occupational health world, seem to think that most people are exagerating their symptoms to get out of work. I ask, why would they do that? How many people do any of us know that are truly “lazy” and unmotivated? We get that way when we feel powerless to iprove our situation.
Rosalind says
Dear Heidi -I’m glad you got a diagnosis. Did it help you live your life better?
Mary says
In addition to doctors believing that patients “exaggerate to get out of work”, there is also a whole brand of CBT geared towards stopping “fear of pain” etc. Which is right, except that it can easily be taken to an extreme.
This conversation happened when I was trying to push for more tests and get medical instead of psychological help. I explained that I had given up on an exercise class which I really loved because every time I went, the pain it caused was so severe that I could not sleep that night, and needed to take strong painkillers for several days afterwards. The response was “and look what was the result? You are still in pain, but now you are missing your exercise class as well”. This was a very well-meaning person, who eventually helped me to get back into treatment. But they were so focused on their assumptions — “most people give up activities due to pain and end up extremely limiting their life and regretting it”, that they were not really taking in the extent of my problems.
The eventual solution was: I burst into noisy tears and was clearly so distressed that I got my referral back to a specialist. I was diagnosed and significantly improved with appropriate physical therapy. The exercise class still causes me pain, but within manageable limits, so I am back to doing it regularly. Which is what I had tried to explain to them in the first place – I have always exercised even with pain, and it took a really severe problem to make me stop.
But this, and similar incidents, indeed got me to the point that, like Heidi, I get tense and defensive at the thought of going to a new doctor and explaining my problems again. The sad thing is, I have seen people who indeed fear movement and need the kind of psychological help to get over it. Unfortunately, there seems to be a lot of belief among certain types of doctors that almost everyone is like that, which can be a really difficult thing to overcome.
Rosalind says
Mary – It’s really sad that this happens to us. Unfortunately the world is full of well meaning people who don’t say the right thing at the right time. We just expect more from health practictioners, don’t we? We can only really take charge of ourselves – what we say and how we respond. That’s why I coach people and write about this stuff. We all need help to do this better -particularly those of us challenged by living with chronic illness! Thanks for sharing.
Mary says
Rosalind, what I find difficult about those well-meaning health professionals who (unintentionally) make me believe that it is all in my head, or, that it is all in the wrong choices that I am making with respect to managing my conditions. In fact, the encounter I described was a painful wake-up call that let me know that I let myself be lead into that belief. It happened 2 months after I came to an appointment with a specific goal in mind – to explain that I disagreed with the idea that I needed primarily occupational therapy/psychological help, and get myself another referral. But I still let myself be led into “exploring what psychological help can give me”, because it was very easy to doubt myself when my symptoms were disabling but not easy to explain.
I had the misfortune to suffer from several difficult to diagnose conditions. I actually have a good track record with respect to making decisions about appropriate treatment. And still it is easy to be led into “if my symptoms are not easily explained by the first specialist who sees me, and if they suggest that your only option is living your life the best you can at your current level of pain and disability, then the right way to react is to throw everything I can into managing myself at the current level of the problem, without seeking more help, because it is all my responsibility to live my life despite the illness”
Rosalind says
Mary – These are difficult decisions. I find it helpful to consider if a diagnosis will make a difference in what I’m doing or if there is treatment that would help. But sometimes we have no idea what we’re dealing with and we have to hope that maybe there are ways to improve this. It can be a lonely path – and I admire your ability to see the obstacles you’ve faced with clarity!
Heidi Moore says
Rosalind–
You asked me whether the diagnosis helped me to live my life better.
Oh my goodness yes. Primarily, it helped me to get routine imaging of aneurysms, to help doctors decide when to operate (and avoid a rupture–like the one that I had before I had the diagnosis). Having doctors willing to look out for me this way makes me feel less worried.
But secondarily, the diagnosis got me the right treatments for my pain. Before, no one would believe me. Just recently, a doctor said, how did you do without medicine for this pain?
Is this what relief feels like? Living my life better. Yes.
Rosalind says
Thanks for the explanation. I work with several clients who don’t have a diagnosis and these stories are helpful!
Lori Loveday says
For years I’d been going to different drs. and getting diagnosis’s from Münchhausen’s, shingles, I was dirty and needed to bathe better and eat better, to just plain rudeness and blown off. I was in my drs. office daily at the counter crying sometimes because it hurt so bad. I took matters into my own hands and collected all of my records from every dr., ER, Stanford, UCSF(I’m on the west coast), various clinics, and anyone who had any info on me. To get the records for FREE, sometimes they charge the patient, I would say it was for a dr. or major University. That’s a little tid-bit that will help you to get your records without them charging you an arm-and-a-leg to get them. It was a long and tedious process but it paid off in the end. I had to do the research myself, mostly on line. Sometimes I would run an idea by a dr or technician and take their advice with a grain of salt. Thank goodness I had a background as a medical assistant and worked in some great practices and learned a lot. Armed with 2 D ringed binders of notes and records, a couple of stuffed manila envelopes that all barely fit into a large book bag. I took this book bag to every appointment I ever had. I worked for years to put the pieces together. Through trial and error, I found a dr. that would at least write my requested lab tests, CT, and MRIs, and such. I think she did it more or less to get me off her back.
To make this long story as short as I can, I NEVER took “There’s nothing wrong”, “The tests came back negative”, “The radiology report showed nothing”, and more inadequate reasons as definite. I looked at them myself and researched for the specialist that would confirm my diagnosis suspicions, which had been a big “?” up until then.
It was a pituitary tumor. I had Cushing”s Disease. But while going to all these different drs., I’d also been diagnosed with Behcets Disease. I was lucky enough to have 2 rare diseases! Now because it took so long to get a diagnosis on the pituitary gland, which is “pea-sized” and nestled in the base of the brain that is right between your eyes, the tumor had grown to the main artery to the brain. This is unusual and I have to have a yearly MRI to make sure that the inoperable tumor does not grow in a way that would cause certain harm my life.
So my answer to the statement, “It’s all in your head” is, “Yea, and it’s called a brain tumor, dummy.”
Rosalind says
I never cease to be amazed by the stories I hear. You were so persistent and it paid off big time. Thanks for the information about how to get your records for free! I hope that you are getting the treament you need and at least FEEL better!
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