in attempt to help spread awareness during Invisible Awareness Week (September 11-18th) I think it is important to participate in these things because as open as i am with my diseases, there is still so much even my closest friends and family do not know. unfortunately this is how most of living with a chronic invisible illness is.
26 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Crohn’s Disease, Ulcerative Colitis, Fibromyalgia, Small Nerve Fiber Neuropathy, Cyclic Vomiting Syndrome (when you have 1 autoimmune disease, you likely have at least 5 more)
2. I was diagnosed with it: when i was 17 years old.
3. But I had symptoms since: as long as i can remember (they always seemed to be worse during family functions, graduations, parties
4. The biggest adjustment I’ve had to make is: consistency. in order to stay semi flare-free, i have had to cut wheat, meat, greens, fruit, sugars & alcohol out of my diet. in college this meant no drinking beer, when i did, i paid for it. there are times i “cheat” if im feeling well, but only when i am not in the middle of a bad flare.
5. Most people assume: Crohn’s isn’t all about pooping. while some of it is, it’s a small part of the type i have (extreme pain in muscles/joints, scary infections, immunodeficiency, chronic lung issues, organ damage). most of my Crohn’s is severe pain located in my lower left quadrant. a lot of the times, i throw up as well.
6. The hardest part about mornings are: everything. in college, i had to move all of my classes past 11am so i could wake up and be sick for the first 2 hours I was awake. when you wake up, all of your organs do as well, including your digestive system. some days when i wake up i am in severe pain, making it even harder to get through my morning routine. sometimes i feel as though ive spent a days worth of energy just brushing my teeth.
7. A gadget I couldn’t live without is: my iPad.. makes trips to the bathroom exciting. 👏
8. The hardest part about nights are: fully relaxing. my body (stomach) is so tensed up during the day, i find it extremely hard to unwind sometimes.. when i lie down i can feel every body part start to hurt & can never seem to get comfortable. I think most of it is due to my fibromyalgia and anxiety.
9. Do you know others with this disease; many who have been the best support system i could have asked for.
10. Each day I take: 15 pills. this is a HUGE improvement since diagnosis. left the hospital taking upwards of 50+ pills a day. I self inject Humira every other week.
11. What are some of your comfort measures; heating pad & stress pillow, sleeping in mom & dad’s bed (will never change), laying next to Yukon, watching the 1999 women’s world cup win over china… and shark week
12. If I had to choose between an invisible illness or visible I would choose: invisible illness. I am used to my illness being both. ive become good at advocating for myself & have learned to appreciate days when it isn’t so obvious. i cannot tell you the amount of times i’ve heard “but you dont look sick” or “you look awful today”. sometimes its obvious i dont feel well, but as much as i want to take it as a compliment, there are days it gets under my skin. i may not look sick, but you also dont look ignorant? choose your words carefully when speaking to someone with a chronic illness.
13. What hurts the most having a chronic disease?: though they are so supportive and try their best, there are still times my family (and friends) don’t understand my disease. its hard for them to understand what i cant eat, what i can eat and how truly exhausted i am. there are days that i truly think i wont make iy through the day because of the pain. when I say “no” to going out because I don’t feel well doesn’t feel good. I’ve lost many friends who don’t understand. The ones worth while have stuck around.
14. The hardest thing to accept about my new reality has been: the simplest things can make me have anxiety; getting an invite in the mail for something – what if im sick and cant make it? not knowing when you will be sick or who will be with you is a terrifying thing to deal with, especially in a new surrounding.
15. Something I never thought I could do with my illness that I did was: run. anywhere besides to the bathroom. here I am on my journey to a half marathon!
16. The commercials about my illness: misinforming. (see #5). the commercials for any prescriptions are made by the drug manufacturers, who have no personal experience dealing with Crohn’s and true side effects of the disease.
17. Something I really miss doing since I was diagnosed is: eating greens, grains, cheese, red meat, spicy foods, sugar
18. It was really hard to have to give up: privacy. i remember the first couple hospital visits & having to be showered by someone else, feeling violated and embarrassed. yes, this disease is embarrassing and i have had to except full humility at times in order to get my business done. in public places.
19. My illness has taught me: 1) independence. i matured quickly after diagnosis, as my responsibilities were more than most adults could handle. 2) ive also learned how much people back away from you because they get so scared to lose you, that they will choose flight over fight. (and thats okay to me! just be honest) i also learned who stays… the good ones.
20. One thing people say that gets under my skin is: other than “you dont look sick”? “I have a stomach ache”. “I wish I had that, or at least the flu so I could lose some weight”. “You look awful today” especially when I’m feeling ok.
21. But I love it when people: offer to help without asking. my mother has come to my house and cleaned the whole thing while i was sleeping (many times) asking, or when i receive cards/surprises in the mail or a small bag of groceries, anything that helps save me a bit of energy is the best gift anyone can give.
22. My favorite motto, scripture, quote that gets me through tough times is: this too shall pass. (i need this sewn on my heating pad)
23. When someone is diagnosed I’d like to tell them: . there will be days that you may want to give up – if you must, give up. but when you wake up the next day no matter how crummy you feel to keep going. no ones illness will get better by them feeling sorry for themselves. learn routine, cut things out of your diet one by one and see what makes you feel the best. exercise routinely, no matter how tired you are. advocate for yourself. accept the help that is offered to you.
24. Something that has surprised me about living with an illness is: im happy. there has been times ive told my story to friends (or strangers) and their reaction is always one of three things; 1) “i am so sorry, you seem so strong, i would never know looking at you” 2) “oh wow, thats embarrassing, i feel bad for you” (most of the time i dont take it to heart, MOST of the time its not ignorance, its the fact they are unaware & they need exposure.
25. I’m involved with Invisible Illness Week because: If all of us do our part, write a blog post, re tweet this post, share on facebook, pass on info.. whatever. Each step is a step closer to awareness, understanding and acceptance. It is the easiest thing we can do, but collectively will make a difference. (THANKS CHRISTINE! – author of the Spoon Theory”
26. The fact that you read this list makes me feel: loved. grateful. hopeful. 💜