“But you don’t look sick.”
This is a common phrase heard by the invisible illness community; while people may think it’s a sort of compliment, it’s actually extremely invalidating and frustrating. We constantly feel misunderstood, judged and ostracized by those around us (even close family, friends and healthcare professionals).
What do you do when you feel this way? What do you do when your body throws the fucking kitchen sink at you, suddenly making you feel all alone? You pretend. You give into the invisibility of your disease and mask it the best you can. I am exhausted from hiding my illness from others, and this is one reason for starting this blog.
After beginning to share my life with chronic illness, I decided I wanted to expand the dialogue. I enlisted the help of a few incredible, inspiring and BADASS young women who all battle at least one form of invisible illness (mental and/or physical). Their stories help to shed light on invisible illness and break down certain stigmas surrounding this community.
Please read about their incredible health journeys; waging constant battle against your own body is so incredibly difficult, but you are not alone. We understand you. We hear you. We see you.
Meet Hannah Martin.
Invisible Illness: Depression
SUICIDE TRIGGER WARNING!
“I’ve had quite the mental health journey over the last eight years. One of the hardest parts about having major depressive disorder (MDD), besides the recurrent depressive episodes and years of therapy, is how misunderstood it is.
Even with all the internet exposure mental health has gotten throughout the past few years, there is still a lot of stigma and I still have to be extremely careful where and with whom I share my experience with.
I’ve had to hide my disorder with teachers, employers, and even friends who think those with depression are just weak minded.
I used to hide my MDD from everyone because I didn’t want to freak people out. Over time, however, my depressive episodes got worse. I felt like I couldn’t talk to anyone about it in an honest way and had horrible self esteem because of it.
It took me until I was suicidal and ready to give up completely that I was finally able to tell my mom how bad I was getting. This was during Spring Break, my sophomore year of college. I had driven home to the Seattle area from Boise and the only thing on my mind was how I planned to end my life that week. It took me five days to finally settle on a plan. I almost went through with it but I just decided to give it one more day.
I went to sleep that night and the next morning my mom found evidence of what I had planned to do. She asked me if I planned to harm myself. Tears formed in my eyes and she asked me if it was worse than that. I was able to nod my head yes and then immediately started sobbing. My mom, who is a real life super hero, immediately jumped into action. She called a suicide help line to figure out what to do in this situation. They instructed her to take me to the ER. I spent the night there and was able to calm down enough to be sent home.
I saw my psychiatrist a few days later to put together a plan of action. My psychiatrist put into words something I had never heard before. He explained to me that the brain can become so depressed that it’s considered damage. That’s what had happened to me. My brain was damaged from how long my depression had gone untreated. I needed time to heal. He recommended that I withdraw from school and enroll in a rehabilitation-like therapy program for people with extreme mental illnesses like mine.
This was the first time I had ever experienced someone take my problem seriously and this was the first time I ever felt like my disorder was valid and that I wasn’t just being dramatic. For the first time in years I had hope that I was going to be okay. It wasn’t any instant fix but my active suicidal thoughts became passive ones and after about 150 hours in therapy over the summer, they vanished entirely.
I’ve done a lot of work on myself since then and have learned to be more vulnerable when I need help. I still have bad days and have even had a couple depressive episodes since then. I’ll probably be working against this disorder for the rest of my life.
I think of it as having a sensitive brain that requires extra attention. I do a lot to stay healthy every day. I constantly base my decisions off how it will affect my mental health. Sometimes I’m forced to choose against my mental health, especially while being a student.
I just try to regulate as much as I can. Sometimes I miss assignments after a bad mental health day. Ive learned to forgive myself on bad days and work ahead on good ones. I judge myself less and because of that I’m able to push myself to succeed.
The cool part about all of this, because it’s been a pretty bleak story up until this point, is that I finally found something I can be passionate about. I’m currently studying psychology in hopes of one day becoming a clinical therapist.
Having something to be passionate about has made everything I’ve gone through worth it.
I feel so much more sure of myself and I’m so so so glad I lived to see myself get to this point. I know I’ll struggle in the future but I have a purpose and several emergency plans and a whole mental health team in place to prevent another life threatening brain injury.” -Hannah
If you struggle with depression and are considering self-harm or suicide, please seek help.
National Suicide Prevention Lifeline: 1-800-273-8255
“Connect” to 741741 for FREE help from Crisis Text Line
Invisible Illnesses: Type 1 Diabetes & Celiac Disease
“In seventh grade I was diagnosed with Type 1 Diabetes as well as Celiac Disease. I was in DKA and miserable. It didn’t hit me that I would have these two incurable diseases for the rest of my life and when I did realize it, it hit me hard. Type 1 is hard to deal with mentally and physically and for all my friends with diabetes, you are all so incredibly strong.
I am currently recovering from Diabulimia which is where you restrict or don’t take insulin in order to not gain weight.
Disordered eating and many body weight and image issues may come with any diagnosis, and no one should feel isolated or ugly because of their disease or disorder.
We are here and visible and beautiful.” – Emma
Invisible Illness: Multiple Mental Illnesses
“I have suffered at the hands of psychiatric conditions for the majority of my life; not only until I reached high school did they become truly debilitating. I tried numerous treatment methods with little success.
Eventually the idea of a service dog was brought up. Fast forward and Winnie and I have been working together for a year and a half. Her tasks help mitigate my disabilities and allow me to live an independent life. While she does not cure my afflictions, she helps me manage them in a way I didn’t ever think was possible.
There is challenge to it though. Aside from the dog attached at my hip, I appear as a normal, healthy young adult. My illnesses, which were once invisible, are now made visible with the use of a service dog.
While I certainly get unwanted comments and invasive questions whenever I am out in public, it is worth it to be able to live the quality life I deserve.
In a time where I was consumed by so much darkness, Winnie came to me as a guiding light and my life has been brighter and filled ever since. She is my guardian angel and I know that together, we can face the hard things.”
Invisible Illness: Lupus
Koda has struggled to confirm a Lupus diagnosis with her physician, despite her blood results testing positive for Lupus three different times; they instead wrote her illness off as “chronic lower back pain”. However, Lupus is so much more than this.
According to the Mayo Clinic website,”Lupus is a systemic autoimmune disease that occurs when your body’s immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart and lungs.Lupus can be difficult to diagnose because its signs and symptoms often mimic those of other ailments. The most distinctive sign of lupus — a facial rash that resembles the wings of a butterfly unfolding across both cheeks — occurs in many but not all cases of lupus.
Some people are born with a tendency toward developing lupus, which may be triggered by infections, certain drugs or even sunlight. While there’s no cure for lupus, treatments can help control symptoms.”
Koda is very sensitive to sunlight; she has to limit her time exposed to the sun, or else she breaks out in hives.
She is not the only person, living with a chronic illness, who struggles to gain the proper validation & diagnosis from her doctors. Getting recognition for chronic pain is hard enough, but it is that much more difficult when you are a female. We are dismissed far too often.
It has been an honor to know and work with these ladies. I can’t thank them enough for their courage & vulnerability in sharing their stories.
Also, a BIG thank you to our lovely photographer, Randi. Her work is incredible.
“Here’s to strong women; may we know them, may we be them, may we raise them.”
We are here for you.