1. Do you have a primary diagnosis, if so, what is it?
A: Spina Bifida and Tethered Cord Syndrome. All of my chronic ailments - neurogenic bladder, neurogenic colon, antibiotic resistant kidney infections - are all direct consequences of my diagnosis.
2. How long did it take you to get diagnosed?
A: 21 years. I should have been diagnosed at birth, but through a series of unfortunate events and pure medical negligence I was not.
3. How did you feel when you were first diagnosed? (ex: relieved, upset, numb?) What was the first thing you did?
A: Relieved that I had answers, but it opened a whole other can of worms. I already had bacteria colonized in my urinary tract, the damage to my bladder was already done, my colon was on its way out, and I had actively dying nerves in my legs. It took two surgeries to even stop my body from degenerating. It also took me months to truly understand the gravity of the situation. I had hoped that I would get better, but I realized I wouldn’t, and that I would have to drastically change my way of functioning.
4. What advice would you give to someone who is chronically ill but undiagnosed?
A: Never ever ever give up on getting answers. If you don’t like the answers you are getting, switch doctors. Make demands. Advocate for yourself. Do your own research into your family medical history. Take copious notes of every doctors appointment and lab result that you get and take a notebook to every appointment with all pertinent information.
5. Has your chronic illness changed your perspective, and if so, how?
A: Pick your battles. Don’t sweat the small stuff. Self care isn’t always the $100 massage. Sometimes it is a warm blanket and quiet. Listen to your body.
6. What moment are you most proud of in your chronic illness journey thus far?
A: Getting a colostomy bag. It gave me my life back!
7. What was your hardest (or lowest) moment, mentally and/or physically, that you’ve been through on your journey
A: On the days that I have been rendered immobile, in a massive nerve flare, it is a struggle to even walk to the bathroom. The neuropathy pains are intense and unreal and feel like fire down my thighs, and the pain is so intense I have to take something to make myself pass out. Those are the worst days. When everything seems hopeless and I can’t leave my house even if I wanted to. Also waking up in the ICU and realizing I am being kept immobile. It was painful and disheartening that I could not control any movement for days.
8. What or who has helped you the most during the lowest days?
A: My pup, Princess Penelope. She’s 9 and I have had her for 8.5 years. She is my best friend.
9. If you had any words of advice for someone struggling with a similar diagnosis, what would they be?
A: You have survived 100% of your worst days. Keep going. You will survive this one too.
10. What would you like the world to know about life as a chronic illness patient?
A: I would say 90% of people experiencing physical pain need medical or psychiatric attention. Pay attention to the warning signs around you. Everyone is fighting a battle that you know nothing about. Seek help for yourself or others if you even have an inkling that someone needs assistance.
By Samantha | @mourvictoris