{"id":9544,"date":"2022-10-18T09:01:09","date_gmt":"2022-10-18T16:01:09","guid":{"rendered":"https:\/\/dev.mab.marketing\/lupus\/?p=9544"},"modified":"2022-10-18T16:33:45","modified_gmt":"2022-10-18T23:33:45","slug":"living-with-an-invisible-illness","status":"publish","type":"post","link":"https:\/\/dev.mab.marketing\/lupus\/living-with-an-invisible-illness\/","title":{"rendered":"Patient Voices: Living With an Invisible Illness"},"content":{"rendered":"

LIVING WITH INVISIBLE ILLNESS<\/b><\/h2>\n

Why being told \u201cbut, you don’t look sick\u201d or \u201cyou’re too young\u201d is not helpful, and can be detrimental to getting the treatment invisibly ill patients need:<\/b><\/h2>\n

Being invisibly ill is very complicated. I would be lying if I said I didn’t want to look young, pretty and not sick. Unfortunately, being invisibly ill presents many challenges, one of the biggest challenge is being believed by doctors, family and friends because we \u201clook good\u201d. This often delays proper testing, diagnosis and treatment. According to lupus.org, <\/span>it takes nearly six years for people with lupus to be diagnosed, from the time they first notice their lupus symptoms<\/span>.<\/span><\/p>\n

I recently received a total hip replacement. Something I really needed, but not something common for a 34 year old. I was in a lot of pain and completely dependent on mobility aids for months as I tried to figure out the best treatment and surgeon. It took 10 months of PT, 3 orthopedic surgeon opinions, one canceled surgery, 2 MRI\u2019s, 3 CT scans, and too many to count x-rays to come to the conclusion that a total hip replacement would be the best option for me. THEN, 3 months of getting the actual surgery scheduled, 2 months off Benlysta and other meds, 4 pre-op appointments with different specialists\u2026only to have insurance deny the surgery 7 days before it was scheduled!!! So after all of that, the week before surgery was spent advocating for myself. I spent hours and hours on the phone with my insurance company and doctors to sort it all out so I could get the surgery to happen as scheduled.\u00a0<\/span><\/p>\n

It was so stressful. And the \u201creason\u201d for denying the surgery was \u201cshe is too young, and it is medically unnecessary\u201d. My insurance was trying to play doctor. They did everything they could to try and deny surgery. But they didn’t know who they were messing with. I\u2019m a fighter and I had hope for pain relief that could vastly affect my quality of life. Having that dangled in front of my face and then taken away was beyond angering. Anywho, it took playing their games, hours of my time and them not showing up to the peer to peer doctor review that ended up getting the surgery approved. Kind of funny that it took them just not showing up to finally get it approved. It had nothing to do with me as a patient or what was best, but their error. SO frustrating, but I have learned time and time again that insurance is a game and it takes a lot of fight to get the treatment you need. Whether it be surgery or medication, they don’t really care about what is best for you. So keep fighting!\u00a0<\/span><\/p>\n

Many fellow warriors go through a lot of judgment because our illnesses are invisible. We hear \u201cbut you look so good!\u201d…That’s what’s tough, what we look like on the outside does not determine how we feel on the inside. Of course hearing that you look young, pretty, and not sick is not an awful thing to hear\u2026 the thing is the outcome. Because we do look good and we are young getting the proper treatment we need is such a fight. A much bigger fight than if we just looked sick and were older.\u00a0<\/span><\/p>\n

Here are some responses from fellow invisible illness warriors to the question on how being told \u201cbut, you look good\u201d or \u201cyou’re too young to\u2026\u201d has affected them?:<\/span><\/p>\n