One of the worst feelings you can experience as a chronically ill person is invalidation. It’s not necessarily that others don’t believe you (although that is also a tremendous problem and a discussion for another time), but that they either don’t see or don’t understand how much your illness(es) impact your daily life. Especially when mental health plays a role in your battles.
And what makes it even more frustrating? When that invalidation comes from healthcare professionals. When, to their eyes, you “don’t look sick” enough or you don’t have “enough” chronic illnesses or you’re “too young” (no matter how thick your medical chart) to warrant feeling depressed.
I have struggled with depression for a year and a half now, starting when infertility problems really came to the forefront of my life. But those issues were usurped by far more serious problems.
Surgery to remove the brain tumor when the medication side effects became intolerable:
Then something else went wrong, and I had to wear several ambulatory heart monitors for almost the entire month of January 2017 to figure out what the problem might be:
And so it was, after much testing, that I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). And just for the sake of completeness, I was additionally diagnosed with an “unspecified connective tissue disorder” that’s not quite Ehlers-Danlos Syndrome, but fairly close. According to the new 2017 classifications, I’m fairly certain I have what’s now identified as a Hypermobility Spectrum Disorder (HSD).
Now, what does this picture display have to do with depression and invalidation?
It should be awfully clear that by the start of this year, I’d been through some serious stuff in a rather short period of time. Six medical diagnoses and three surgeries in a year’s time? It’s no wonder I’m depressed!
But sometimes I’m made to feel like I don’t have the right to be depressed. Upon meeting me for the first time, no fewer than two doctors stated, “Well, you’re a very healthy young woman, so you should be happy about that.”
Say what? Did they even look at my medical history? Celiac disease, endometriosis, adenomyosis, chronic pelvic pain, infertility, migraines, prolactinoma, carotid artery aneurysm, depression, social anxiety (and then the POTS and HSD that these particular physicians diagnosed me with.)
No, I’m not obese or diabetic or a smoker or anything like that. But I am not healthy. Many of those conditions listed above are chronic illnesses. And you know what? Having to deal with all of them makes me really depressed.
Just because I “don’t look sick” doesn’t mean I don’t feel awful when you see me. There are days when my POTS flares so badly that I have to spend essentially the entire day in bed because I’m too dizzy to sit up. I practically need to crawl to the kitchen to get my Gatorade to hydrate myself, and I keep my salt tablets on my nightstand so they’re within easy reach. Having to exist like that is really depressing.
Just because I “don’t look sick” doesn’t mean I’m not in terrible pain when you see me. Although my endometriosis is in a sort-of remission, I still have chronic pelvic pain of indeterminable origin. My baseline is about 3/10 (it never gets less than that), but most days I live between 5-7/10. All day, every day. And it’s really depressing.
So no, doctor, don’t tell me I should be happy. Because the condition you just diagnosed me with has made my life a new kind of hell I haven’t experienced before. If you could spend one day in my shoes, you wouldn’t last.
I’m surviving. I’m existing because I have to. But please, don’t ever invalidate someone’s right to experience depression due to their life’s circumstances and challenges. You don’t know what it’s like to be them. And you should pray you never do.