You know those days where it just hits you like a ton of bricks that you’re sick? That your body is dying, and regardless of what you do, you are continuously in pain. The world seems to crash down on your shoulders all at once making it hard to breathe, hard to think. You can’t help but wonder if you’ll ever get a shot at normalcy again. It’s as if you’re suddenly drowning, encompassed by your problems.
[Caption: Health is never a measure of human worth, written over photos of Teddy Roosevelt, RJ Mitte, Miles Davis, Helen Keller, Franklin D. Roosevelt, Michael J. Fox, Stephen Hawking, and Lucille Ball]
- Teddy Roosevelt, former president with epilepsy and asthma
- R.J. Mitte, actor with cerebral palsy
- Miles Davis, jazz musician with sickle cell disease
- Helen Keller, writer and social activist with hearing and visual impairment
- Franklin D. Roosevelt, former president with polio
- Michael J. Fox, actor with Parkinson’s disease
- Stephen Hawking, physicist with ALS (Amyotrophic lateral sclerosis)
- Lucille Ball, actress with rheumatoid arthritis
When you use phrases like, “as long as you’re healthy” these are just a few of the people that your language is excluding. No one owes you health. Being healthy does not make you a good person, and being unhealthy does not make you a bad person. The state of a person’s body does not reflect their soul, their mind, or their worth as a human being.
whoever said what doesn’t kill you makes you stronger has never had a chronic illness
2. What will you tend to do at nights, when you can’t sleep?Netflix, my physical therapy, paint my nails, write letters to friends (my friends are currently living all across the country), journal, make bracelets or watch a movie.
4. How has your condition impacted your mental health? It has definitely made me more depressed in a way. I wouldn’t say I have depression, but I’m more prone to having days where I struggle with depression, and depressed thinking, due to being sick.
6. Hardest thing to do when you are flaring? Basically anything. Just living is hard ha.
8. Favourite comfort food? Well, I have severe gastroparesis and can’t hardly eat, and rely on my feeding tube for nutrition. But if I could eat, my comfort food would probably be loaded mash potatoes. Or cookie dough. Or Ice cream, or chicken fingers, or anything really. I just miss food a lot!
10. Name 3 things that you miss, taken from health limitations?Freedom, Social Life, Food
12. Biggest injustice about living with a chronic illness? Just that we face so many more obstacles and challenges then the average person, yet help is so limited for us, and the help we do get is nearly impossible to receive without jumping through all the hoops. I wish the world was more empathetic towards the chronically ill.
14. What items, related to illness, could you not cope without?Well, literally, my backpack that I haul around the house that has all my medications, pilll boxes, anti-itching lotion, pill cutter, thermometer, pulse ox, feeding tube supplies, etc. Also my notebook and pens because I’m a compulsive list maker. But I lean heavily on music and my wonderful dog.
16. Do you know anyone in real life who shares your condition?Yes, a girl who was a year younger, lived about 8 blocks away from me also had gastroparesis AND pots, but unfortunately and sadly passed away last year.
18. Lovely things said to you and something ignorant/negative, about being sick? Lovely: That I am inspiring, and give hope to others. Ignorant/Negative: Being told I was a waste of space and that I should die already.
20: Describe the feeling after walking up/down stairs? One time we were at a hotel and the elevator was broke and our room was on the top floor so we had to walk up 5 flights of stairs. When I got to the top I just laid down and my mom said if I didn’t do anything else in my life she would still be proud that I got to the top of the stairs. That is what going up the stairs is like. It is a monumental and huge task.
22. What is the biggest thing you would like people to understand about your illness? That despite my many chronic illnesses, I’m still me. I’m still Whitney. I still want to have fun and be included, even if it has to be tweaked a little so that I can join. I’m not my illnesses. Yes, my illnesses make up a lot of my life, but they do not define me. I’m still the happy, go lucky, fun person I was before, I just have obstacles in the way that most don’t have to face.
|1:||what have you been diagnosed with, (and possibly self diagnosed with)?|
|2:||what will you tend to do at nights, when you can't sleep?|
|3:||worst experience/side effects of a medication?|
|4:||how has your condition impacted your mental health?|
|5:||describe your social life|
|6:||hardest thing to do when you are flaring?|
|7:||your worries for the future?|
|8:||favourite comfort food?|
|9:||tell us a valuable lesson you have learnt, through being unwell?|
|10:||name 3 things that you miss, taken from health limitations?|
|11:||how old were you when you started noticing symptoms?|
|12:||biggest injustice about living with a chronic illness?|
|13:||worst advice you have been given about your health?|
|14:||what items, related to illness, could you not cope without?|
|15:||can you remember being pain free?|
|16:||do you know anyone in real life who shares your condition?|
|17:||one symptom you would love not to have?|
|18:||lovely things said to you and something ignorant/negative, about being sick?|
|19:||are your family supportive, or mostly ignorant to your suffering?|
|20:||describe the feeling after walking up/down stairs|
|21:||any natural supplements, powders or alternative treatments you would recommend others try?|
|22:||what is the biggest thing you would like people to understand about your illness?|
Recently I was asked by a friend what my dreams, aspirations, and hopes were for the future. Being chronically ill has a way of making everything you once dreamed of deemed nearly an impossible feat. Everything is up in the air due to my illnesses. Moving out. School. Professions. Jobs. Traveling. Family. It all falls upon being sick. There are so many variables to it that it’s almost impossible to have dreams. Or more so, it’s discouraging to have dreams. So for now, as cliche as it sounds, my answer is; my dreams, aspirations and hopes for the future are to just be happy. I know many would look at that and laugh, but really, what else is there? If I’m happy (granted still sick) everything else will fall into place. Yes, I still have dreams/hopes, but writing them out makes them seem too much like expectations. And expectations when you’re chronically ill usually lead to disappointment. So my dream, aspiration and hope in life is to just be happy.
I spent all day looking up dessert recipes that I cannot eat, longingly wishing, as my feeding tube pump continuously beeped at me to add more formula to my bags. How come we never realize how blessed we are until that something gets taken away?