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.