What’s it really like to live with chronic illness every day? How do you deal with the physical symptoms, emotional turmoil and practical problems? In this interview series, real life ‘spoonies’ share their stories and tips.
Brittani Renee’ is a 28-year old student suffering from DRESS Syndrome, a rare autoimmune disease that involves delayed hypersensitivity reactions to drugs. She’s also the founder and CEO of the Spoonie Essentials Box, a supportive community centered around a monthly care package for chronic illness fighters.
Tell us a little about yourself.
Hi, I’m Brittani. I am a graduate student at Pepperdine University School of Public Policy, I was diagnosed with DRESS Syndrome September 2015. I also have Crohn’s disease, Lupus LCE, and Colorectal Cancer stage II. I am 28 years old and adjusting to this new life has been interesting.
When did you first get sick?
I first got sick June 2015 after a fight night celebration at my parents’ house. I actually thought I had food poisoning. Long story short, I began to throw up everything including water. After about two weeks, I went to the ER and they said I had a virus, they said I had to just let it run its course.
After another few days of throwing up and becoming very weak I went back. This time I made the doctor a deal, I said if I don’t throw up this apple juice after they had run test for bacteria and given me fluids, I’d go home. The doctor hadn’t even gotten out the door before I threw up a green sludge substance. I was admitted to the hospital where I spent 3 weeks not knowing what was going on, one doctor even wanted to send me home after giving me antibiotics even though I was still on a liquid diet and throwing up. Finally, I was given a colonoscopy and endoscopy to learn I had Crohn’s Disease.
Fast forward a month of me being on Sulfasalazine, the “miracle antibiotic”, and prednisone. The doctors had instructed me to taper my prednisone consumption every week, when I got to the second week of tapers I began to feel itchy and very uncomfortable. I was in class listening to a lecture from Professor Lloyd and I just couldn’t take it anymore. I went home to take bendryl and nap, when I awoke I had red dots all over my body. I went to my grandparents’ house and they took me to the ER.
I wasn’t in the ER 15 minutes and I was placed in a bed. The attending doctor told me she would give me two epi shots and if things didn’t change she would admit me. Not only did the epi shots do nothing, I actually got worse in the 2 hours I was in there. I was admitted to the hospital and I kept getting worse every day, my liver enzymes were skyrocketing (5k+), my kidneys were failing, my lung capacity was depreciating, and my skin began to peel off leaving exposed patches of flesh.
I was diagnosed with DRESS Syndrome by Dr. Farukhi – my hero – 11 days after being in the hospital. A rare autoimmune disease. I spent 3 months in the hospital. I lost my ability to walk, I actually went home in a wheel chair with all sorts of assistive devices (loftstrand crutches, tub bench, wheel chair, reacher stick, sock assister, and walker). They had been satisfied with my ability to care for myself, but not caring that I was no longer the person I was before I walked into that hospital.
DRESS Syndrome is a delayed, multisystem hypersensitivity reaction to drugs, characterised by fever, skin rash, lymphadenopathy, haemological abnormalities and inflammation of one or more internal organs.
In what ways does having DRESS Syndrome affect your daily life?
DRESS Syndrome affects the things I eat, the medicines I take, and the products I use. It is hard because there are so many classes of prescription drugs that can cause a DRESS Syndrome flare but not all of them are known. There also isn’t a cure – the mortality rate for DRESS Syndrome is 10-20% with most deaths caused by liver failure. I am literally terrified any time a doctor wants to give me a new medicine, because most doctors haven’t even heard of DRESS Syndrome so most of them don’t believe me.
Then there’s the reading the labels of everything I want to eat or asking restaurants “what’s in this”, it’s really just the details of everyday that make it hard. You can’t ever forget that something can kill you, but the trouble is DRESS doesn’t have to happen immediately. You can take or eat something and up to 8 weeks later have a flare. So in the moment I may be completely 100% fine and then wham, 6 weeks later, just like the first time I find myself in a fight for my life.
How do you handle everyday practical problems?
If I was being honest I would say I don’t, I rely heavily on my roommate Kristin and my best friend Alex. Without them I don’t know how I would make it. I can’t carry things that are not even remotely heavy anymore, I can’t walk far without taking rest, and I am hardly ever hungry. I think I’ve delveloped a fear of food to be honest. And this is all on good days.
On bad days, I stay in bed all day and just wait for the pain to pass or my “body battery” to charge up enough to do anything. I’ve suffered from insomnia ever since I’ve been sick. My body will not sleep, between the pain and the just “weak” feeling I just don’t sleep.
Do you have any tips on coping with symptoms? Is there anything you can do to prevent relapses?
My best advice is to read everything and be your own advocate. Just because someone is a medical professional do not assume they have heard of DRESS Syndrome or that they understand it. I have had doctors tell me I can’t get it again and it was a one-time occurrence when that is completely false information. It is easy to get frustrated and to feel hopeless but just take a deep breath and know that it isn’t easy but you will find the strength to manage.
For me I have to take extra precautionary steps because I have other health complications that can severely affect my quality of life if I do not adhere to dietary restrictions or take my medication. So I double and triple check and I ask more questions than Jeopardy every time I’m in front of a specialist.
How do you keep joy in your life on a day-to-day basis?
Honestly, the Spoonie Essentials Box gives me joy. It gives me purpose. I feel as if making the monthly care packages for people gives me something constructive to do with my time and energy I do have rather than focusing on all the health challenges I now have.
I built the Spoonie Essentials Box to be a community rather than just a box, because almost every day I feel isolated and alone. No one can ever truly understand what it is like to have an illness you can’t see, you can barely explain, and a life you didn’t ask for. So I figured ensuring that no one ever felt like they were alone would be the premise of my entire business model. Monthly care packages that came a long with a community of support.
What would you like to tell others who are diagnosed with Dress Syndrome?
I’d tell them “EDUCATE TO ADVOCATE”. Educate your friends, your family, your doctors and anyone who will listen because not enough people even know what DRESS Syndrome is, let alone how to live with it.
I would also tell them that it honestly does get easier. I pretty much know what foods have “chemicals” or “drug classes” in them, I have memorized the drug classes I know of that I cannot have, and it is so easy with Google to look up something and see if it has ever had a DRESS case. It is annoying and it will be incredibly frustrating, but I figure the more I open my mouth the less hassle someone else may have to endure, because I refused to settle and refused to allow my care to be in the hands of someone else. You will forever and always be YOUR OWN BEST ADVOCATE.
How do you deal with the physical symptoms, emotional turmoil and practical problems of living with chronic illness?
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