Patient Voices: Living With an Invisible Illness

October 18, 2022


Why being told “but, you don’t look sick” or “you’re too young” is not helpful, and can be detrimental to getting the treatment invisibly ill patients need:

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 “look good”. This often delays proper testing, diagnosis and treatment. According to lupus.org, it takes nearly six years for people with lupus to be diagnosed, from the time they first notice their lupus symptoms.

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’s, 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…only 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. 

It was so stressful. And the “reason” for denying the surgery was “she is too young, and it is medically unnecessary”. 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’m 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! 

Many fellow warriors go through a lot of judgment because our illnesses are invisible. We hear “but you look so good!”…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… 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. 

Here are some responses from fellow invisible illness warriors to the question on how being told “but, you look good” or “you’re too young to…” has affected them?:

  • It makes me feel like my illnesses aren’t valid or I’m not adequate enough of a human.
  • I feel very belittled when told “man I did that when I was 60” when referring to  7,000 ft. elevation hike. 
  • Being a mom and a wife. 
  • I feel like a psycho because no one believes me.
  • Getting proper treatment.
  • Continuing to fight to get a diagnosis after being dismissed by doctors.

One thing that has taken me by surprise is how bold people are in asking invasive/rude questions. “Why are you limping?” “you’re too young to use a cane” “you’re too young to have a hip replacement” “You look fine, why are you using a handicap spot?”. Even typing that I thought to myself “who would even ask these things??”. The sad thing is I have been told/asked each of those statements several times!! I do think that sometimes people mean well and truly don’t know the right thing to say. I found this list of ways to support and ask questions that are “invisible illness friendly” from MS Focus Magazine (source 2):

1) I wish I knew what to say, but I care and I’m here for you. 

2) I believe you. 

3) Can I bring you food? Or is there a chore around the house I can help with? 

4) I know how hard you’re trying. 

5) Don’t feel bad if you have to cancel plans at the last minute, I understand. 

6) You look so good, but how are you really feeling? 

7) I hope you’re as well as possible. 

8) It must be difficult to be in pain or feel sick all the time. 

9) I just wanted to check up on you and let you know I miss you! 

10) You’re doing everything you can. 

I loved these questions and statements. They help validate and show understanding of invisible illness. If you are struggling with being taken seriously by your doctor or family, please know you are not alone and you have to keep fighting to find the right team of doctors and support you deserve!

By Krissy Stephenson

Krissy Stephenson has been living with chronic illnesses for over 12 years. Her full time job is managing her health and household with a supportive husband, two boys and 2 dogs. For Krissy’s full lupus story, watch Season 2, Episode #6 of the #YourStoryOurFight Podcast at lupusla.org/podcast! You can also watch the full episode here, on Lupus LA’s YouTube Channel.