There is a weight to a chronic illness diagnosis. The name of the illness being written down on your medical file forms a lead blanket that lies atop you for the rest of your life. Because that’s what chronic illness is: it’s a burden you carry until you die. I know that sounds a little on the depressing side, but it’s also on the realistic side and it’s important to stay realistic when talking about a chronic illness diagnosis – it’s an awfully weighty thing.
My Chronic Illness Diagnosis – Bipolar Disorder
I was diagnosed with one chronic illness, bipolar disorder, 20-odd years ago. I remember the devastation of it. I remember being in my bachelor’s apartment and researching depression when I came upon this new, scary illness called “bipolar disorder.” And then I remember seeing myself in the symptoms list. It was dark in my apartment and the only sound you could hear was my printer printing off page after page of information on bipolar disorder – and my wails. The chronic illness diagnosis was so weighty that it was crushing me. The idea that I would have an illness for the rest of my life was unthinkable. The idea that I would have to take drugs forever was unthinkable. I was scared about everything that meant. I was scared about what being on drugs would make me, what it would make reality, and what the difference was between being an addict and being someone who needed to take medication every day just to survive.
But even though that was the night I figured out my chronic illness diagnosis, that moment changed none of the symptoms. That moment changed none of my history. That moment changed none of my suffering. It was a weighty, devastating moment in spite of the fact that it actually changed nothing.
As I’ve said before here, acceptance of bipolar disorder is a process, and I’ve had a really long time to work that process. The fears I had that night have been dealt with. I now accept that bipolar disorder is a massive part of my life and has been for decades.
My Chronic Illness Diagnosis #2 – Chronic Migraines
And then, recently, I was diagnosed with chronic migraines and I feel like I’m back at the beginning of the chronic illness acceptance process.
I’ve been having headaches for more than 13 months almost on a daily basis. I had a CT scan months ago that showed nothing, but I haven’t been able to actually see anyone for a formal diagnosis until recently due to COVID. I finally saw a doctor who specializes in headaches he did confirm these were chronic migraines and they weren’t going to go away, at least not in the foreseeable future.
On the phone with the doctor, I was fine, of course. I didn’t betray my feelings to the medical professional — I usually don’t. But after I got off the phone, the weight of the chronic illness diagnosis threw me down some stairs. I was forced to deal with the reality that the suffering I had been experiencing for more than a year wasn’t going to go away. It was going to stay there. It was going to be chronic. And when I thought about how much my bipolar has taken away, I couldn’t handle the idea that another chronic illness was going to do that to me too. Bipolar disorder raped my life and so much of what I wanted for it. And I had to undergo that again. I could truly feel another lead blanket atop my being. I was devastated – again.
The Reason Chronic Illness Diagnoses Are So Devastating
See, I have been in pain from migraines for more than a year and even though the symptoms the day before a chronic illness diagnosis are the same as the symptoms the day after, there is somehow a lack of hope after the confirmation from a doctor that the suffering is not going away. It’s being hit with reality, and reality is like an old 2 x 4 with rusty nails sticking out of it – it hurts when it hits you. And I must say, a chronic illness plus another chronic illness certainly does have a compounding effect, not to mention the fact that being in near-constant migraine pain certainly can activate the suffering involved in a bipolar mood episode too.
I was very surprised I had such a pronounced reaction to the diagnosis; after all, I had done it all before. As it turns out, hearing that you’re going to have a lifetime of treatment and suffering doesn’t get easier the second time around. I think my biggest fear is not being able to support myself, and being forced into bed with an ice pack on my head over and over certainly makes this fear more of a reality.
The Good Thing About a Chronic Illness Diagnosis
Okay, while I’m mourning this chronic illness diagnosis, and I consider this a very normal and important part of acceptance, I also recognize that there is something good about it – treatment. A chronic illness diagnosis is critical because it leads to better treatment. Initially, when I spoke to the specialist, the treatments he offered were so expensive I didn’t think I could get any of them. Now, though, I’ve found a program that has reduced the cost to where I can afford it. This has offered hope I haven’t felt in over a year. Obviously, this is the positive aspect of the chronic illness diagnosis on which I need to focus. I get this, of course. But this positive note doesn’t take away the sting of the diagnosis.
If you’re having trouble accepting a bipolar disorder diagnosis or another chronic illness diagnosis, I absolutely get it. I’m on your side. But one thing I do know is that acceptance is possible. That’s one thing I do have on my side: I’ve done it before, and I suppose I’ll do it again.
Image by Nick Youngson CC BY-SA 3.0 Alpha Stock Images.
The most grievous weight of a mental illness diagnosis, I believe, is the stickiness of stigma!!! and the most dangerous offender, in my humble opinion, is the so called “health care professionals”
Did you know that it’s become so common for health-care professionals to blame mental illness for people’s physical health concerns that there’s a term for now it called “diagnostic overshadowing.”
Here’s a disturbing graphic example of stigma in action
https://www.cbc.ca/news/gopublic/hospital-patient-crawls-out-mental-illness-1.5871307
The man in this link has bipolar disorder. He’d been stable on medication for 7 years!!! when he went to the emergency department of a hospital in search of relief for his PHYSICAL ailment.
He’d been suffering unbearable excruciating leg pain, for about a month. But the disclosure of his bipolar diagnosis adversely affected the treatment he received for his physical pain
At the hospital he was given an MRI. When nothing unusual showed up he was discharged by a psychiatrist!!!
“As soon as they got the results … they took off the blankets and started saying, ‘Come on, get up! You’re fine, there’s nothing wrong with you!'”
It took him 20 minutes crawling on his hands and knees like a dog to leave the hospital with a nurse goading him on saying
“You’re a big boy! You’re strong! Come on, big boy, stand up!'”
How humiliating is that!!!
In essense the hospital staff had said his pain was “all in his head,”. Lucky for him he didn’t give up. A few days later, he made his way to CAMH (Canadian Association Of Mental Health) where a psychiatrist immediately determined that his suffering had nothing to do with his mental health.
An ambulance took him to Toronto Western Hospital in downtown Toronto, where a neurologist diagnosed Guillain-Barré Syndrome, a rare disorder in which the body’s immune system attacks the nerves. Guillain-Barré Syndrome can worsen rapidly and attack the organs. It can also lead to full-body paralysis and possibly death.
It took him almost four months undergoing intensive rehabilitation to be able to walk again
Hello Natasha, I know you prefer traditional treatments but have you tried oil pulling? Oil pulling has cured me of lot of chronic illness. Please google “oil pulling migraines” and you will see it has alleviated many people of suffering with migraines. I have been living with irritable bowl syndrome the past few months and the only thing of late that could treat it was oil pulling. I have read a lot of the other IBS preparations don’t work but oil pulling has restored my bowel function. Please look into it and give it a go, you have nothing to lose but migraine headache
I also know this pain. I was diagnosed with hemiplegic migraines when I was 6 or 7 years old and bipolar at 35. I have other chronic illnesses as well. All of which have a genetic element. I wish i had answers for you.
Sending a huge virtual hug from the UK
Natasha, sorry to hear that. Migraines can be debilitating (my wife struggles with them). I’m sure you know that the comorbidity with mental illness is huge, so you could always count this as part of your bipolar (ok, bad joke). There are effective treatments out there that can make a huge difference for many people, but which specific ones work for you can involve a lot of trial and error (yes, another overlap with mental illness). I’m glad you found someone to help you with this. If I can offer one piece of advice… I hope you can find a good prophylactic regime and do your best to avoid frequent pain meds, or things can quickly escalate into chronic daily headache from medication overuse / rebound, and that is very difficult (and slow) to correct. Given how you’ve persevered with your bipolar, you’re in way better shape than most to be able to manage this, and that’s a good reason to be hopeful. Wishing you well.
of all medical diagnoses, psychiatric are the least meaningful. often, different psychiatrists give the same patient different diagnoses; or, if they agree on the label, the treatment is different. worse, the longer a patient is in the system, the more the labels accumulate.
i You write well about the experience of hearing your bipolar diagnosis for the first time; i recall similar feelings of doom, as if my future was suddenly going to be an endless series of meds, nutbins and wasted potential.
and, well, to some degree, that’s how life has gone. still, it’s been a heck of a ride. for me, acceptance has meant gradually understanding bipolar disorder not as something i *have* but instead who i *am*. i came into the world wired this way; if it’s harder for me to deal with the world than it is for ‘normals,’ that’s bad luck for me, but it’s not as if i am suffering from some kind of disease process that can be treated or wished away.
at the bottom of it all, if i had the choice of being normal, i’d decline it in a heartbeat. even with the depressions, even having lost so many kindred spirits to suicide, even with all the rest — i’d rather be me than someone else.