Faithfully Frazzled

As anyone who follows me on Facebook knows, yesterday was a terrible pain day for me. It’s always a tricky thing talking openly about it on social media because I know that people don’t know how to respond, and I get it. It’s not fun to talk about and, as a person with a healthy sense of humor, I’d much rather be posting silly memes and jokes. So, why do I do it? Why am I open about such touchy things as depression, chronic pain, ADHD? One reason: so others feel seen. Not everyone who suffers feels comfortable talking about these issues so I’ve decided it’s important to speak for my friends and family in the chronic illness community.

In the various support groups I’m a member of, one overall sentiment is clear: chronic illness sufferers feel misunderstood. There is so much frustration in this community that comes from a) not being taken seriously by medical professionals, b) being in constant pain with inadequate medication, and c) lack of support from family and friends. There’s a sad phenomenon which finds many people even doubting their own sanity. On the one hand, there’s a fear of being seen as a hypochondriac and on the other there’s the very real existence of symptoms that go ignored and even undiagnosed, sometimes for years at a time.

This meme makes the rounds regularly in the chronic illness/pain community for a good reason. Almost all of us have had something to this effect said to us on at least one occasion it is soul-crushing. I personally was ignored for close to 10 years until, by pure happenstance, my doctor retired and I was sent to his replacement. Over the course of a handful of visits he managed to undue 10 years of neglect, identified some of the major causes of my decline in health, and directed me to other doctors who could address my specific needs. I cannot state enough how unprecedented this is. I’m one of the lucky ones! Women overwhelmingly are the ones who are most neglected and gaslit. Doctors no longer dare call us hysterical but the implication is there.

So, let’s just say for a minute you do get diagnosed adequately and you find a doctor who will take your pain and symptoms seriously, the next obstacle is often how to treat your illnesses. Most people don’t realize that once you get diagnosed with one illness there are so many other comorbid conditions! Why have one when you can have five! My personal diagnoses are Ehlers-Danlos Syndrome, Celiac Disease, Mast Cell Activation Syndrome, Postural Orthostatic Hypertension Syndrome, Psoriatic Arthritis, and previously, severe anemia. Sounds crazy, right? Like, how can one person have so many disorders?! Surely, you’re just looking for attention! Lord almighty, that is the absolute LAST thing anyone with chronic illness wants! What we crave is understanding. The most beautiful gift you can give someone you love who is suffering is learning about their conditions. By learning about their condition you can then show them empathy and compassion, which is sorely needed.

It’s a hard thing to wrap your head around the fact that the ‘chronic’ part of chronic illness means persistent or long-lasting. It doesn’t necessarily mean forever-ever but it does mean indefinite. That reality is H A R D. I personally choose to try to find the joy in the rest of my life; my sweet family, my full belly, my comfortable life. The joy of the Lord! My nervous system and my immune system might be at odds with my desire for a healthy life but nothing can take the Holy Spirit from me! Finally, don’t be afraid if and when someone you know does feel comfortable talking to you about their pain. It’s their reality and they’re not typically looking for your pity – rather, your love and support.