The way you respond to things changes when you have a chronic illness. You start to feel disappointed about things you never would have imagined could be disappointing, and happy about what many would feel are awful things. This is the complicated state of things within illness.
It’s strange, the first time you rejoice over test results that show something is wrong. It is odd making phone calls that go:
“It’s not cancer.”
“I’m so sorry.”
“Thank you.”
Life is different, and so your emotions change to match this new, different life.
I had a doctor, Dr. Poole, who was young and frustrated with my illness, just like I was. I remember an appointment with him that will stick with me forever:
“I have your test results,” he said lightly, “Do you want the good news or the bad news first?”
“The bad news.”
“The bad news is that your tests all came back normal.” Here he paused, then added, “The good news is all your tests came back normal.”
We laughed quietly, and I asked, shaking my head at life, “What’s next then?”
Chronic illness turns the world upside down, and your emotions go with it. Which is something that is difficult to explain to people not familiar with this kind of life.
You may wonder if you’re losing your mind. You’re not.
I know all of those questions. How can I explain the desperate need I have to feel validated for these strange things happening inside my body? What words can I use to express the deep desire I have to know I am not the only one who is suffering with whatever disease this is?
You seek the one thing all humans seek: that you are not alone.
What you are looking for is a place, a center, a known quantity. It’s crazy to think that you’d rejoice over a diagnosis of chronic illness, cancer or mental illness. But it happens. It makes you happy. It fills you with the knowledge that you do not suffer alone; that you are not the only one living in this weird, painful hell.
You are not rejoicing that others suffer. You are not gleeful over any of this. This is not the kind of happy where you go out and have a drink to celebrate. You don’t throw a diagnosis party.
However, a small part of your soul may sing.
A negative test result means something is wrong, that this is real. A diagnosis means there are others who have had this, enough of them that it has a name! You are not crazy. Or, well, maybe you are, but it’s the same kind of crazy as other people.
At the same time, there is sadness. Sadness because you are ill. Sometimes a sense of loss, especially when it’s likely you’ll never get your “normal” life back, as in the case of chronic illnesses. There is pain. Grief that can overwhelm you.
And you feel all of this at once.
You thought life was complicated before: welcome to a completely new emotional realm.
For those who care for the ill, there’s another weird complication: feelings of happiness regarding the pain of another. You can feel this strange relief to know that what the other feels is real, diagnosable, even if not treatable. That they aren’t crazy. That all this time, money and worry has paid off. Yet… there is something else.
Sorrow that someone you love is hurting makes these positive emotions feel like a betrayal. An aching wish for the other to be healthy, but a mixed up sense of hope that maybe there’s something that can be done now that there’s a name for what is happening to them. Perhaps now there is a chance they will get better, improve or be happier.
When it’s a patient, there’s this strange feeling of success: you’ve figured out what’s wrong! All those years of training, experience, and learning have paid off, if only for this one moment, where you can say, “This is what’s wrong.” Now you can plan a treatment, figure out a place to start, and start working with them to move them towards better health. Yet, there is never a moment when you wish pain or illness on patients.
Illness is complicated for everyone.
There is no easy path through chronic illness. Like so many awful things, the only way out is through. And on that path there are ups and downs, sometimes at the same time.
Right now, as I write this, I am waiting for a MRI to be scheduled, which will likely be followed up by a lumbar puncture. I never, ever imagined I would wish for these tests to show abnormalities. But, yet, I find myself doing just that.
And my therapist has said, “Yes, you are definitely suffering from Major Depression.” And I find myself feeling happiness, because it will help with my disability application; sad, because it means the monster has caught up with me again; pleased, because it means I am not going full-on crazy; achingly frustrated, because it means these miserable feelings, panic attacks and piling frustrations will not easily dissipate. I am going to have to fight this war, again, but I know I am not alone and that this is not the first, nor likely the last, I will have to fight and I know my enemy and I have support, love and SNRI’s to help me.
Happy. Sad. Peace. Loss. Frustration. Hope. Anxiety.
I live in a war zone. My body is the prize. My soul is the battle ground. The possible casualty list is long, and I know all the faces by heart, as anyone unwilling to bear arms has fled the field long ago. I feel wildly alone, deeply loved, and truly supported. If I hold on tight, I might make it through this war, live my life and still find joy.
It’s hard not to have mixed emotions.
Deeply moving and so true! You are NOT alone and know this first. But I can truly understand your loss in the sea of not knowing. But do know that even though you may be adrift now, the shores are there to be found. Please hold tight to your raft, look for the shore and swim with all your might…you will make it, we are out there with you and you will find many of us, adrift beside you. Hold tight, swim hard, the shore is approaching. (((HUGS)))
Posted by deb aka murphthesurf | July 27, 2011, 9:49 amThank you. I’ve been in this ocean a long, long time. Just trying not to drown this time around.
I appreciate your support and kind words. They mean a lot to me. I’m honored this touched you.
Posted by Summer | July 27, 2011, 9:18 pmYou just put into words things I’m feeling, and feelings I can’t even name because I don’t know what they are. Or won’t admit to myself what they are. I have a mental illness.
Diagnosed 1 year and 10 months ago. It’s not under control yet, even with medication. I’m in that ‘audition phase’ with medication. (where something works for a period of time, then due to either little or no effect, or severe side effects you have to try another medication)
This is adding so much more junk to the existing pile of junk,that I’m overwhelmed by the immensity of the whole pile. Reading your post (a few times) made me realize that I’m not even trying to do the basic things that would make this more bearable,
So in addition to helping me recognize what some of those feelings are, your words have given me hope. Hope that tomorrow will start on a better note. Blessings and love to you.
Posted by janne | July 27, 2011, 11:02 amJanne, I *hate* the audition period – I’ve certainly been there before. I’m glad I could help, and I hope tomorrow is better.
Posted by Summer | July 27, 2011, 9:43 pmThank you for writing this. I’m facing what appears to be a degenerative illness that is treatment resistant. Supposedly it’s about 5 things in one. No one knows what is wrong. I’m losing the ability to do a lot of things. It’s just terribly sad. Yes, a correct diagnosis would be wonderful news. A treatment would be even better. A treatment my health insurance would pay for would just be too much happiness though, let’s be honest :P
Posted by Susan | July 27, 2011, 11:32 amSusan, I am sincerely sorry to hear your struggling with the unknowns too. It’s such a hard place to be. Sometimes harder when you suspect there will always be unknowns. Good luck, with everything!
Posted by Summer | July 27, 2011, 9:34 pmGreat, beautifully written post. My chronic illness shows up nothing in the blood tests. Yay. And yet… not yay. Somehow it’s important to seek some sort of validation for the pain that I experience – and that others can not see. Sometimes there’s swelling and something externally obvious. The pain’s worse then. And yet, it’s a ‘yay’ because then people know I’m not malingering, there IS something wrong. I have no rheumatoid factor in my blood. This is a good thing. And yet, my arthritis could still develop into rheumatoid arthritis even without the thing they test for.
Having a chronic illness is complicated enough but having a variable illness somehow is harder to explain. It’s harder to explain why I can’t walk properly when I was perfectly fine two hours earlier. It’s even harder to convince people “It wasn’t anything I DID and there isn’t anything that will help. It just is”. And yet… well, I’m happy it’s not worse. I’m happy that I can appreciate what my body CAN do rather than what it can’t.
Posted by Ruth Rosselson | July 27, 2011, 2:28 pmRuth, thank you so much. And that is the best attitude to try to keep – gratitude for what you still have! I try to remind myself of this often. :)
Posted by Summer | July 27, 2011, 9:33 pmI relate to every single thing you just wrote! I just recently saw my doc this week, and he said the exact same thing regarding my test results being normal. I am partially diagnosed but so many questions still remain. I was once gently reminded that not everyone gets to have an official diagnosis, but that doesn’t mean that there won’t be enough information to come up with some treatment plans.
Posted by S. | July 27, 2011, 4:05 pmI got that reminder recently, along side the suggestion of the Mayo Clinic. I am fine without a diagnosis too – but I need some kind of treatment plan, management plan – something. I am going to ask for a referall to the local Pain Specialist again as well. It’ll be a year, in September, since the abdominal pain started, and it’s gotten out of control. I need something.
Posted by Summer | July 27, 2011, 9:33 pmI defintely get you. I’ve written about a few angles of this, just touching on a little bit of this. Honestly, this post is really good but it’s such a deep, tangled topic…I wonder if you might be just the person to write something longer (a series of posts, even a book) getting into the different aspects.
Posted by Jennifer Dorfman Pettit | July 27, 2011, 9:14 pmThank you. It is a deep subject. I am including a chapter on it in my book – this actually comes from that chapter.
It may well be worth a whole book, but that’d be a solid bit of research as well. But I think it is one I would enjoy writing. I will definitely put the idea on the shelf, to consider after this one is done.
Posted by Summer | July 27, 2011, 9:29 pmI remember when I finally got diagnosed with poly-cystic ovarian syndrome about 20 yrs ago. I had spent 2 yrs going from doctor to doctor trying to figure out why I was doubled over in pain and sick to my stomach for 2 wks every month. I was only 19 and working my way through college, and this was causing me to miss work, get behind in my tuition and rent payments, and I had no health insurance, so bills were mounting. I was desperate for a diagnosis and since the symptoms were similar to ovarian cancer, I was running from cancer specialist to cancer specialist trying to get someone to finally decide that I had ovarian cancer. I didn’t care. I just wanted A NAME so that we could then treat it.
When I finally found the doctor that diagnosed me with poly-cystic ovarian syndrome, I hugged her and I told her it was the best day of my life. She was shocked and was trying to get me to join a support group. I told her that I didn’t need a support group, as having the condition didn’t bother me. I just wanted A NAME and a treatment plan, so now that I had that, I was in 7th heaven.
Posted by JosieMazz | July 28, 2011, 9:22 amJosie, I think that, much like me, you need to be *doing* something about it. That’s certainly what helps me the most – treating it, dealing with it, so I can get back to my life and do the things there that need doing – like work, spending time with friends and family.
I can imagine she thought you slightly off kilter with that response, but I about did the same to the doctor when he found out I had seritonin poisoning. He felt awful, feeling like he should have listened to his instincts sooner and figured it out rather then send me off to so many specialists – but I was just grateful he knew what was wrong to start with, and delighted when he figured out why! I may have hugged him too.
I’m always amazed that doctors don’t understand this more, or frankly see it more. It seems so many suffer much too long not knowing what’s wrong.
Posted by Summer | July 28, 2011, 11:28 amReading your article brought tears. I have been in this situation a few times. the first with pain in my upper abdomen for almost a year, going back and forth to my doc, and him telling me I was fine, He finally sent me to a specialist who diagnosed a large tumor in my small intestine. Very rare and could have been fatal if I had not been persistant. No matter what anyone says, you know your own body. Pain is not normal. I was also diagnosed with Fibro after 2 years of pain. As smart as doctors are they do not always know everything. We have to be our own advocate. Blessings to you.
Posted by Tracey | July 28, 2011, 5:12 pmI just want to make copies of this for my family, friends and physicians. I have always felt guilty about the disappointment of ‘normal’ test results…I thought wanting a bad result made me broken inside.
GiniB
Posted by growingthroughpain | July 28, 2011, 11:05 pmAbsolutely rivetting essay here. Thanks so much for this. Like so many women, I was misdiagnosed and sent home from the E.R. with an acid reflux misdiagnosis despite presenting with textbook heart attack symptoms like chest pain, nausea, sweating and pain radiating down my left arm. (Research now suggests that women under the age of 55 are SEVEN TIMES more likely to be misdiagnosed in mid-heart attack than our male counterparts).
So two weeks of increasingly debilitating symptoms later (all the while popping antacid tablets like crazy!), I returned to the E.R. – desperate for relief but still feeling very reluctant and embarrassed to “make a fuss” over nothing. After all, two weeks earlier, a man with the letters M.D. after his name had told me quite clearly: “It is NOT your heart!”
That newly revised diagnosis (“significant heart disease”) and subsequent rush from the E.R. directly up to the O.R. for emergency treatment brought that sense of “strange happiness” you describe so eloquently here. I felt actually relieved to have such a catastrophic diagnosis – I could finally relax and let those who knew exactly what to do next take care of me.
But until that diagnosis, we have nothing. No knowledge. No resources. No hope.
Since surviving that heart attack, I have spoken to thousands of women on the topic of women and heart disease – our #1 killer. During my presentations, I always repeat Tracey’s wise counsel (comment July 28): YOU KNOW YOUR BODY! You KNOW when something is “not right”.
Posted by Carolyn Thomas | August 6, 2011, 10:27 amYou have a real gift with words, Miss Plum.
Posted by Cowboy R | March 27, 2012, 1:37 pm