What’s your diagnosis?

December 5, 2014

We’ve all gotten some form of the question from a non-medical person:

What’s your diagnosis? What have you got? What is it? What’s wrong with you?

But how often do we have an answer?

For a “healthy” person it seems easy. The answer is usually something well-known and straightforward that requires no explanation, like the flu, a broke leg, a torn rotator cuff, allergies. You give that as your answer and move on.

If you have a chronic illness, though, there’s no simple answer.

Maybe you have one straightforward diagnosis. So you answer: lupus, multiple sclerosis, ulcerative colitis, fibromyalgia, Hashimoto’s disease. You’re even kind enough to give the full name instead of saying MS, UC, fibro, or Hashi’s. Even so, the other person has no idea what that is, so they ask what it is. But do you really want to spend 20 minutes explaining it? Probably not. I usually don’t.

Of course, you might have multiple diagnoses. Maybe you have 2. Maybe you have 12. I always have to stop and think before I list mine, and that confuses people. They don’t understand that the list is ever evolving. A new diagnosis is added, another is changed to something different, and yet another is removed. And the list is long, so I usually just give the few “big ones” and I have to choose which those are at the moment. Besides, the list is long enough that it’s hard to remember. That’s why I always keep an updated list on my phone: so that I can give an accurate list to new doctors. But non-medical folks don’t want the full list, and they don’t understand it. See the previous paragraph. They don’t know what most, maybe any, of my diagnoses are, so they want explanations. But I don’t feel like giving them over and over and over and….

Then again, maybe you don’t have any diagnoses. That’s hard for a lot of people to understand. In their minds, if you’ve gone to the doctor, then you should know what’s wrong with you and you should have a name for that problem. Simple. If they only knew. Medicine is a science that doesn’t have all the answers. So maybe you’ve seen 15 doctors and don’t have a diagnosis yet. Or maybe you have one of those “almost” diagnoses. You know the type. Like my first diagnosis was “Undifferentiated Connective Tissue Disease” which is just a fancy way of saying “We know you have the indicators for a connective tissue disease but we can’t figure out which one, or maybe it hasn’t been discovered yet, so we’ll just give you this label instead.” Try explaining that to someone who doesn’t even know what connective tissue is! Still, I was glad to have that non-diagnosis because at least I had a label to give people. When I had no diagnosis at all for 11 years, too many people (including doctors) thought I was making up my symptoms or that my problem couldn’t really be serious.

On top of all of that, you could have diagnoses you think are wrong. I have a few of those in my records. For example, I don’t think I really have IBS. Irritable bowel syndrome was diagnosed by multiple doctors, but now I think I had undiagnosed Celiac Disease and leaky gut as well as some food intolerances. Now that I’ve addressed all of those issues, my IBS has magically gone away. If you suspect a diagnosis is wrong, should you even bother to mention it?

Of course, you could have a combination of these. Maybe you have one or more diagnoses, but more that haven’t been diagnosed yet and others you don’t believe. That’s especially hard to explain. Sure, I can tell someone I have Hashimoto’s disease, for example, and maybe even explain what that is. Then they think that’s it. When I say there’s something else that we haven’t figure out yet, they’re confused. I have a diagnosis. That should cover everything. How is it possible there’s something else? Well, it’s possible because the human body is complex and, yes, it’s possible for more than one thing to go wrong at a time. Saying I should only have one diagnosis is like saying you can’t have a flat tire and a dead car battery at the same time. Yes, you can. And yes, I can have Hashimoto’s disease and sleep apnea and whatever-the-hell-else all at the same time.

I just got curious. Writing this, I realized that I was only remembering a few of my diagnoses, so I pulled up the list on my phone. The first in the list was one I’d forgotten about as I was writing this: PCOS. That stands for polycystic ovary syndrome. It was diagnosed ages ago, but I’d forgotten. Hence the list. And a perfect example of why these questions are so hard to answer.

Over the last few years I’ve mentioned several diagnoses in this blog, but I’ve never listed them all in one place. I never thought it was important. But I know some of you have been curious, so here’s a short list in no particular order. Of course, this isn’t the same list I would have given when I started this blog back in 2011. Back then, I hadn’t yet received at least 3 of these diagnoses, and I had others that I’ve removed from the list because I know they’re really part of something else. So, as of now, they are:

Hashimoto’s disease, hypothyroid, PCOS, Scoliosis, Raynaud’s disease, tinnitus, undifferentiated connective tissue disease, seasonal affective disorder, upper airway resistance syndrome (UARS), adrenal insufficiency, MTHFR mutation (homozygous A1298C).

How do you feel when someone asks a version of, “What do you have?” How do you answer?

4 Comments | Educating, Frustration, Isolation, Rants, Symptoms | Tagged: , , , , , , , , | Permalink
Posted by chronicrants

It’s ok to ask for help

November 30, 2014

I’m so used to asking for help because of my health. Sometimes it’s something simple, like today when I couldn’t turn a screw that was stuck. I thought maybe it was because of my joint problems. But as it turns out, my very healthy and very strong friend couldn’t turn the screw either, so it wasn’t just me. That felt a bit odd.

But what felt even stranger was asking for my friend’s help with something that was absolutely in now way related to my health problems. Usually the help I ask for is obviously health-related, like bringing me food when I don’t feel up to leaving the house or carrying something that isn’t heavy or large but that I still can’t manage. That kind of thing. And sometimes it’s on the edge, like turning a screw that may or may not really be stuck.

Then there are the things that are completely unrelated to my health in any way whatsoever. And that’s what happened today. I needed to reach something that I just couldn’t reach. Even on a step ladder while wearing heels, it just wasn’t going to happen. Because the thing is, I’m short. I’m very short. Well ok, I’m not that short, but I’m definitely well below average height-wise. My friend is 5’9″ and was able to reach this thing from my step ladder. No one of average height, no matter how healthy, would have been able to reach that thing, so of course I couldn’t come close.

Here’s the weird part, though: I kept trying to excuse asking for help. I kept joking about it, and insisting that I really did need the help in a way that wasn’t health related. And then I wondered why I was trying to justify the request. The friend who was helping me is one of my oldest, dearest friends. She’s one of the only non-family members in my life who knew me before I had any health problems. She has brought me groceries, fetched prescriptions, shoveled out my car after snowstorms, and carried numerous heavy objects. And I have helped her with personal things as well. If I feel the need to justify my request to her, of all people, then it’s obviously completely about me. She certainly didn’t say or do anything to suggest that I was asking for something unreasonable. She has never judged or questioned any of my requests. She often offers unsolicited help. So why was I so defensive?

I hate asking for help. I hated having my mother cut my meat for me when I was 16 and could only use one hand for a while, and I hate asking for help now. I have been judged by too many people, from strangers to doctors to the Social Security Administration, and sometimes I assume I’m being judged even when I’m most likely not. I can’t stand being seen as weak. I was a crier when I was much younger, and around the time I grew out of that, the pain began. There have always been so many things I couldn’t do, and now there are even more. I forget that asking for help is its own form of strength, and so I resist it. Yet I need help so much, and avoiding it just isn’t possible.

So when I really need to ask for help, I expect to be judged as weak, even when that’s not happening, and apparently I get defensive to minimize the weakness that’s perceived. It may not be right or necessary or even make much sense, but it’s where I’m at after more than 2 decades of pain and other symptoms, and more than 2 decades of judgement from others.

Why am I telling you this? Because I’m guessing that many of you also have trouble asking for help. Your reasons might be similar to mine or completely different, but you have your reasons. Sometimes they’re justified and sometimes they’re not. No matter what, I want you to know that you’re not alone.

5 Comments | Expectations, Kindness, Relationships: Family & Friends & Dating & Sex, Support | Tagged: , , | Permalink
Posted by chronicrants

Where’s my apology?

November 29, 2014

Apologies are powerful. They convey regret and an acceptance of responsibility. They are also hard to come by, especially, in my own experience, with doctors.

Over the years I have seen many doctors. Some have treated me well. Others did not. Some were dismissive, some were ignorant. I was told I was just trying to get attention or that I was imagining my symptoms. I was given misdiagnoses. I was dismissed. I was given unnecessary surgery, surgery that could have been avoided completely if the doctor hadn’t ignored some test results.

I received prescriptions, judgments, proclamations, criticism, and referrals. What I never got was an apology.

A simple example: I asked my doctor to run a test for something specific. He insisted on running a less expensive test. When I got home, I researched and saw that the test he ran was inaccurate for the problem I suspected. It came back negative. I paid out of pocket to have the test run myself and it came back positive. He accepted my test results but never admitted that he should have run the test in the first place. Where’s my apology? I spent my own money, did my own research, and spent many hours fretting over this. He could have just ordered the test, but didn’t.

And then there’s that doctor who did the unnecessary surgery. Where’s my apology from him? That was many years ago, but I’m still resentful that he was so pompous about the whole thing, insisted that it was still informative. I read the records. It gave no new information, but it did succeed in increasing my pain, weakness, and instability in that joint. He never apologized.

I know the medical field is wrought with lawsuits that cost doctors a lot of money and their reputations. So they need to be careful.

But we’re human beings, damn it! Patients are not just puzzles that, when you make a mistake, can be taken apart and put back together again. And if you break a piece, you can’t just throw out the whole box. And yet, that’s often how I feel I’m being treated.

I’m not looking for a 20 minute speech for each and every misstep. But when someone clearly makes a mistake that causes harm to another human being, the appropriate thing is to apologize. This is no less true for doctors. They should learn in medical school that saying, “I’m sorry” for their mistakes isn’t a mistake and it isn’t a weakness. Personally, it would make me respect them a whole lot more.

3 Comments | Expectations, Frustration, Healthcare, Insensitive, Rants | Tagged: , , | Permalink
Posted by chronicrants

Working on my health one literal step at a time

November 26, 2014

I’m listening to the rain/sleet/whatever-the-hell-that-is hitting my windows. It’s been a quiet day. Even from my apartment, I feel how empty the city is becoming. The streets have been quiet, no new email is coming in, and few people are commenting on Facebook. Tomorrow is Thanksgiving, and everyone is busy traveling or cooking, finishing work or packing a suitcase. Well, almost everyone.

Two weeks ago I decided to walk every day. I had taken 2 walks every day while I was dog sitting, so 1 daily walk seemed reasonable. My health has been improving, and I know I need to keep pushing myself, within reason. So I set a goal of 1 walk each day, 6 days per week. So far I haven’t quite managed it, but I’ve walked 5 days out of each week, so I figure that’s a good start. I’ll have to try harder to get it up to 6.

On this quiet, rainy, sleeting, slushy day, I didn’t have anyplace to be. No medical appointments or plans with friends. I’d pushed myself to run errands yesterday so that I could avoid today’s traffic, crowds, and lousy weather. I’d succeeded, but I knew I should still walk. I needed to take that walk. I did need to go to the post office. I could wait until Friday, but why wait?

I haven’t been counting my regular walking towards my goal. I want these walks to be in addition to what I usually do. They don’t have to be long, but they should be at least 2 blocks each way if I can manage it. So the trip to the post office doesn’t really count. It’s a walk I would take anyway, and it’s very short – just a block away. But something is better than nothing.
As I walked to the post office I decided it should count. Not because of the sleet bouncing off my umbrella. Not because of the cold whipping my face. But because of the slush under my feet. I walked slowly and deliberately. I focused on my gait, my posture, my limbs and joints. I was as careful as I could be. I knew that slipping and falling could be no big deal, or it could be disastrous. The walk was probably 12 or 15 minutes round trip because I was walking so slowly, so carefully. I held my breath, then had to remember to breath. I felt my ankle turn on some uneven sidewalk that wasn’t visible beneath the snow, and I was thankfully I didn’t injure myself. I felt my foot slip slightly, but I regained my balance.
With every step, I was nervous. But I was also proud of myself. The easy thing would have been to stay home. That also would have been the isolating thing. I needed to be out. I needed fresh air. I needed to see other people. I needed to feel that I wasn’t trapped. And I needed to know that I could keep up with my exercise if I tried hard enough.
There will be enough days that I won’t be able to take my walks. I will be in too much pain, have too much fatigue, or have some other ailment. I will have to choose between taking a walk and buying groceries, which is what happened yesterday. I will have to skip most of the summer, due to my heat sensitivity. So I’m very glad that today, at least, I took that walk. It wasn’t easy, and it wasn’t perfect, but I did it.

4 Comments | Decisions, Isolation, Limitations, Milestones, Raves | Tagged: , | Permalink
Posted by chronicrants

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