Bipolar disorder has been a chronic illness for me, and my chronic illness diagnosis of bipolar disorder happened around when I was 20. That was 23 years ago. I have become a bipolar disorder expert since then due to years and years of study since then. On top of that, I have all those years of personal experience dealing with a chronic mental illness. But now, I’ve been diagnosed with new chronic illnesses. So there are some questions. Is chronic illness diagnosis easier this time around? What does it feel like to be given life-altering diagnoses after already having a life-altering mental illness? And what’s the impact of new chronic illness on existing serious mental illness?
New Chronic Illness Diagnoses
While I’ve known I had additional illnesses for quite some time now (think years), I didn’t receive a formal chronic illness diagnosis until Monday. On Monday, I was given the diagnosis of a hypermobility syndrome (which one specifically is still under investigation) and postural orthostatic tachycardia syndrome (POTS). In case you were wondering, neither of these should kill me or even shorten my life; they just decrease quality of life. Just.
Hypermobility Syndrome
Here’s a bit about hypermobility syndrome from the Hypermobility Syndromes Association (a doctor-recommended resource):
“Hypermobility is the term used to describe the ability to move joints beyond the normal range of movement . . . For a small percentage of the population, instead of being advantageous, hypermobility may be associated with joint and ligament injuries, pain, fatigue and other symptoms. Hypermobility can also be a sign of a more serious underlying condition, which are often passed down through the generations. These conditions are known as Heritable Disorders of Connective Tissue (HDCT) . . . In HDCTs the body’s connective tissue proteins that give the body its intrinsic toughness are affected.”
From here, it gets complicated as there are many hypermobility syndromes.
In short, people with HDCT can:
- Injure easily
- Experience acute and persistent, ongoing pain
- Easily sublex or even discolate joints
- Experience severe fatigue (even in spite of sleep and/or rest)
And, quite frankly, a bunch of other stuff. I have a list of symptoms that is very long, indeed. When your connective tissue proteins are messed up, it can affect virtually every system in your body.
In case you were wondering, there are no medications for hypermobility syndromes. My treatment plan involves being referred to an even-more-special specialist and getting more tests run.
Postural Orthostatic Tachycardia Syndrome (POTS)
As I mentioned, hypermobility syndromes can manifest many different problems, and one of the types of problems is dysautonomia — a disorder of the autonomic nervous system. In my case, this appears to be postural orthostatic tachycardia syndrome (POTS). In short, POTS consists of a specific group of symptoms that frequently occur when standing upright.
According to John’s Hopkins Medicine, they include but are not limited to:
- Lightheadedness (occasionally with fainting)
- Difficulty thinking and concentrating (brain fog)
- Fatigue
- Intolerance of exercise
- Headache
- Blurry vision
- Palpitations
- Tremor
- Nausea
Bipolar Disorder and Chronic Illness
One thing I will say is that additional chronic illness diagnoses are depressing as hell. Considering the compounded pain I will be having for the rest of my life is not an uplifting thing. I’m not sure how to deal with that reality. Yes, I expect it to kick off a depression pretty much no matter what I do. It’s just too big a force.
In other news, there appears to be a link between hypermobility syndromes and psychiatric disorders:
“[People with hypermobility disorders] are at increased risks of being diagnosed with psychiatric disorders. These risk increases may have a genetic and/or early environmental background as suggested by evidence showing that siblings to patients have elevated risks of certain psychiatric disorders.”
That appears to be a cherry-on-the-cake scenario. Like chronically ill people aren’t dealing with enough — people have to deal with a broken brain and broken body at the same time.
Impact of New Chronic Illness Diagnoses
As I said, this wasn’t news to me as I knew I was sick for a long time. That said, having a doctor list 3000 symptoms that I have and then give diagnoses that tie these symptoms into a bow is a horrible experience. Yup, my illnesses are more “official,” and there are many benefits to that, but for the time being, I just feel shell-shocked by the news. As I said, these are chronic illness diagnoses. In other words, these are syndromes I get to live with for the rest of my life, the symptoms of which are likely to worsen as I age. That’s a hard biscuit to swallow.
So, am I handling it better than 23 years ago? I don’t know. We’ll see, I guess. “Handling it” is sort of a long-term thing. I know I have tools and mechanisms to deal with spoonie-dom now more than ever, but that somehow doesn’t make me feel better.
When I was diagnosed with bipolar disorder, I was in the midst of an untreated depressive episode, and that was undoubtedly horrific. I’m not in that place right now, so I guess that makes the new chronic illness diagnoses more manageable. But one thing I’ve learned is that this diagnosis business, while it offers certain information and even answers, is still hard and awful. It’s like being hit with a giant reality stick. It forces you to look at something painful and then try to decide what to do about it (if you even have any options). It forces you to face not just where you are today but where chronic illness will force you tomorrow. I am not a fan.
The thing I know is that if learning about bipolar disorder helped me survive that, then learning about these new chronic illnesses may help me to survive them too. There is an “other side” to shell-shock; it’s just unfortunate that waiting for you over there is your chronic illness.
Image credit: Flora Borsi / Behance Creative Commons
Good article. I too was missing diagnosed for a lifetime. Now I have disabling physical illness. Sorry for the loss.
Hi Natasha, sorry to hear. Piling on additional diagnoses doesn’t help with the “I’m defective” ruminations. But as you say, it’s not really news to you. Like most mental illnesses, these syndromes are a way of categorizing and labelling your unique collection of symptoms as opposed to representing something new or specific you can point to. Even most of the lab testing they can do is about turning up markers for specific variants (e.g., some types of EDS) rather than something that is treated. Just as valid to wrap up everything into one nice diagnostic package and call it “Natasha.”
The labels can help some people understand in a more concrete way what they’re experiencing and help to seek out adaptation strategies, though as with psychiatric illnesses there are huge individual differences in causes and effective treatments/workarounds. If it’s any consolation, in people I know with those diagnoses (and yup, in my biased sample of people with psychiatric illnesses, they’re not uncommon comorbidities), their impact on overall quality of life, while omnipresent, is most often incremental and more of a background awareness thing. A part of the whole package rather than out front and in your face. And many symptoms do overlap with those of psychiatric illnesses and side effects of psychotropics… so again, not entirely new.
With your deep and hard-fought experience dealing with everything you’ve faced in the mental health space, you’re far better equipped than most people to integrate this new information into your life and keep moving on. It still sucks though.