That’s what this post is about. Not being able to cope any longer. We’ve lost several people recently who suffer from POTS (and other comorbid conditions) by suicide. The title has been there for a couple of weeks now but I haven’t written anything. As time has passed, more suicides and attempts have happened… With each one I feel more but can think of less to write. I don’t really know what to say. Every day, I read posts from patients who are struggling to keep going, who are tired of fighting and hurting, and don’t know what to do anymore.
Living with a chronic illness (often several) is hard. It’s isolating, you lose your sense of self, your ability to cope with flares is constantly challenged by new symptoms. The doctors appointments are exhausting and frustrating. The lack of knowledge about Dysautonomia in particular is what I find most tiring. If you don’t have a provider that understands your condition and is TRULY in your corner, you’re screwed. You don’t know where to go for help, you’re tired of explaining what you have, tired of doctors shrugging their shoulders and not giving two shits about trying to find the underlying cause. That is such a huge issue. I see it constantly in my support groups – “I’m so sick and none of my doctors are trying to find my cause.” Dysautonomia is rarely primary, it’s most often caused by something else that’s going on in the body. If you find out what, and treat it, the patient can get some damn relief or at least just an answer. Those without a chronic illness may not understand why an answer matters if it won’t fix you. I can’t explain it. The answer just matters – so much.
If you express to a provider that you’re feeling hopeless, they usually just want to throw an antidepressant at you – if they even acknowledge what you’ve told them in the first place. Depression due to chronic illness is so much more complex than depression originating from a chemical imbalance. Go ahead, give us more drugs to shut us up and not address the real problem… Then when they don’t work or we have side effects or interactions, throw a different AD at us! I’m so angry that this keeps happening. I want to DO SOMETHING but I can barely even advocate for myself.
Standing Up To POTS has a section on suicide prevention, along with some other good information on living with POTS. To be honest, I haven’t read it all yet. I’m sad for the families of those who just couldn’t handle their suffering anymore, angry at the medical community for doing nothing, and feeling really helpless. My hope is that someone else out there can write something more eloquent and powerful that can be used for educating doctors on living with a chronic illness. At the very least, that’s what these families and those who couldn’t fight anymore deserve.