Introduce yourself. What illnesses do you have? How long have you had them?
Carolanne, 25-years-old living with gastroparesis, acid and bile reflux, dysautonomia, polycystic ovarian syndrome, chronic fatigue syndrome, generalized anxiety disorder, panic disorder, and depression.
I’ve had PCOS since I was 13 but consider my ‘sick-iversary’ to be April 7th. 2013, the day I fell ill with gastroparesis. It is by far the diagnosis I struggle with the most.
How have these illnesses affected your life?
My life is nothing like it was prior to becoming chronically ill. The obvious is that I can’t eat. The not-so-obvious side effects of being sick are having to drop out of school, moving back in with my parents, not being able to work, relying on disability, not having much of a social life, frequent trips to the hospital and doctors, canceled plans…you get the picture.
How did you get a diagnosis?
After becoming ill overnight, I went to the doctor on campus and was told I have a stomach ulcer. When I didn’t get better, three more doctors proceeded to tell me it was just a “bad” ulcer and that it would take longer for me to recover. When I ended up in the ER due to malnutrition, dehydration and severe weight loss only a few weeks after becoming sick, I demanded further testing be done. I was quickly fit in with a local GI specialist who followed through with my requests for an upper endoscopy and gastric emptying scan. My GES was severely delayed and provided my diagnosis of gastroparesis. All other diagnoses followed by a new symptom presenting itself and not being GP related.
How have your friends and family reacted to it?
Although everyone was very confused as to how this could possibly happen, my family became my absolute rock-solid foundation of support. Some family members never really grasped my illness (which is something that’s quite common, people either get it or they don’t) and that’s okay. Same with friends. The ones who got it and cared stuck around and the ones who didn’t faded out of my life. It definitely showed me who I could truly rely on and who was a fair-weathered friend.
How does being chronically ill make you feel?
Some days it makes me feel strong and brave. Other days it makes me feel weak and depressed.
If you could have told yourself something when you first remember these symptoms arising what would you have said?
This isn’t the end of your life. You’re on a new path you’d never thought you’d have to take but I promise everything will work out. Don’t give up on your dreams.
What was the biggest realization you have had?
There is a difference between living and being alive.
Where do you see yourself in 5 years time?
I see myself in a house with my lovely girlfriend (hopefully my wife by then!), our adorable puppy, Quinn (who will be 5 years old, oh boy), and a cute little kitten. I see myself hopefully in better health with a job I’m head over heels for. But most of all, no matter what the circumstances, I see myself making a difference in the world.
Have you ever tried any alternative therapies? If so, what? Did they work?
There aren’t really any alternative therapies for not being able to eat, unless you consider being on an all Ensure diet or a feeding tube alternative therapy for getting proper nutrition.
What little things make your life easier?
Physical help from my girlfriend such as carrying the bags, making me vegetable broth, and running errands for me, watching Netflix or YouTube as an escape, and using mobility aids when needed.
Why do you believe you have this illness? Bad luck, a higher power or something else?
There’s no rhyme or reason for why I was the lucky one who got unlucky.
Briefly explain to a healthy person what it is like to live with this illness.
There is no brief way to explain what it’s like to be chronically ill. The only thing I can say is to never take any part of your health and physical ability for granted.
Has your physical illness had any effect on your mental health? Explain.
Of course. Anxiety and depression are very real co-conditions to any physical chronic illness. My anxiety and depression can be directly correlated to how my overall health is at the time.
Give 5 things you are grateful for.
My organs that actually work, my support network (family, girlfriend, doctors, etc.), my furbabies, having access to medical treatments and the ability to take advantage of those treatments, and my willpower.
What would you say to people newly diagnosed with this illness?
This is going to be the hardest thing you ever deal with. Life isn’t fair, it’s difficult, and there will be times when you want to give up, but hold on. Live for the moments of brief relief, live for the moments of joy, live for the moments that make you feel alive…they will come and they will be worth every ounce of pain.
What is your favourite inspirational quote?
It’s okay to not be okay.
How would things be different if you weren’t ill?
My whole life would be different.
Do you think you have become a better person through being ill? Explain.
I think it’s helped me grow as a person but I firmly believe I would be just as good as a person without being sick. I don’t think pain is necessary to help someone grow. It does, however, equip you with a special type of empathy and compassion that someone who is not sick will never be able to feel.
How do you feel about the future?
Scared. But hopeful.
Have you met anyone with the same illness? Did it help?
Yes I have. Knowing someone that goes through the same exact hardships as you helps tremendously. You don’t feel so alone and different. My spoonie sisters have become family.
What networks or websites have you used for support or information about your illness?
G-PACT and support groups via Facebook and Instagram.
How do you feel you have been treated by the medical system? Explain.
I often feel let down. Because there is no cure, there’s no sure way to take away my pain and suffering. I feel like a guinea pig. Because there is so little known, it’s a guessing game as to how to help me get the best quality of life possible. I feel on my own. Because gastroparesis is so uncommon, many doctors and nurses have never heard of it or never treated anyone with a case like mine. I have to educate the people who are supposed to be taking care of me and that’s a scary thing.
What do you say to yourself when you need a pep talk?
I’m not good at self-pep talks. I usually call my therapist who’s superpower is giving pep talks.
How have you managed to juggle your social life through your illness?
I haven’t haha. Most of my friends exist on the other end of a screen.
Name 5 activities you have managed to pursue while being ill and 5 activities you have done that you wouldn’t have pursued if you hadn’t become ill.
Managed to pursue despite my illness: social and political activism such as organizing a rally and physically campaigning, being involved in animal rescue…mainly fostering kittens, graduating college with honors, becoming a mom to the cutest little beagle pup in the world, crafting and making a business out of a hobby I love doing.
Wouldn’t have pursued if I hadn’t become ill: hiking and other outdoorsy activities (when my body allows because I now appreciate my ability to do so), indulging my inner child by going to arcades, kids’ movies, etc., becoming a voice for those who are chronically ill and disabled, writing a blog like this one, and finding and appreciating the little joys in life such as celebrating holidays, weekend adventures, etc.
What impact has this had on your friends, family, partner, parents etc?
It was very difficult on my parents (and still is). They often say it’s the worst feeling in the world to see your child sick and be helpless. My girlfriend has never known me healthy so for her, this is our normal.
What’s the most helpful advice you have had?
Let yourself grieve. Feel all the emotions. Lean on people when you need to. Don’t be too proud to ask for help. Let people in. Be open. And most importantly, be kind to yourself.
Name 5 things you have achieved despite your illness.
Graduating college with honors, worked part-time while going to school, moved out of my parents’ house, adopted a puppy, and organized a March for Health rally.
What has helped you cope with the stress of this lifestyle?
The support from my loved ones, therapy, fur baby cuddles, and medication.
And finally – starting at your toes and working up to your head, name each part of your body and how your illness has affected it.
Legs- weak, little muscle
Tail bone- sharp, bony, easily bruised
Hips- sore, bony
Tummy- covered in scars, stretch marks, extra skin. On the inside, my colon and stomach are broken.
Heart- tachy, not enough blood circulation
Throat- painful due to reflux, often sore
Shoulders/arms- achy, weak
Head- painful, heavy, forgetful, not enough blood circulation sometimes, brain