It’s Invisible Illness Awareness Week! Click here for a little information about how this week got started.
Basically, the purpose of this week is just what the name implies – to raise awareness about how many individuals are actually dealing with invisible illnesses, to allow those with invisible illnesses to open up about their daily struggles, and to just help us all understand each other a little better.
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Gastroparesis (with dysmotility throughout my entire digestive tract)
2. I was diagnosed with it in the year: 2010
3. But I had symptoms since: 2009
4. The biggest adjustment I’ve had to make is: giving up control. Asking for help and letting other people do things for me. Losing some independence. Saying no, I can’t do something. Not having concrete plans. Frequently living in a state of ‘wait and see.’ Balancing optimism and reality.
5. Most people assume: I don’t know what most people assume, but I do think a lot of times people assume I’m doing okay when I greet them with a smile and have a good sense of humour. I’m just a smiley person, though, even when I feel awful. And having a sense of humour about all of this yuck helps me get through the day.
6. The hardest part about mornings are: just not knowing how the day is going to go. This is true for everyone but it’s magnified for me. When I wake up I have no idea if I’m going to be able to do the things I want. I have no idea if I’m going to be able to tolerate any food. I have no idea if I’m even going to be up to leaving my room.
7. My favorite medical TV show is: Grey’s Anatomy, though I kind of lost interest in it last season. I really like reading medical books, though – ones written by doctors and nurses. As the patient, I like having insight to the other side of the doctor-patient relationship.
8. A gadget I couldn’t live without is: well, quite literally, this would be my feeding pump because it feeds me and keeps me alive. But apart from that, the internet (so I guess my computer?). The internet has connected me with so many other people around the world in similar health situations. It is also how I learned to crochet, how I keep in touch with people when I’m too unwell to go out and see them in the real world, and how I gather information so I can be an advocate for myself.
9. The hardest part about nights are: being too nauseous to sleep and knowing that the less I sleep the more symptomatic I am likely to be the next day.
10. Each day I take __ pills & vitamins: minimum 7 pills and 2 vitamins, and then anti-nausea medication as needed.
11. Regarding alternative treatments I: think they definitely have their place as a complement to western medicine. I’ve explored alternative treatments a little in the past, and plan to do so again in the future. At this point in time, however, my main focus is mainstream medical treatment until my condition stabilizes a little more and I have the extra energy and resources to pursue other avenues.
12. If I had to choose between an invisible illness or visible I would choose: I’m kind of in a funny place here because this feeding tube makes my illness much more visible. That said, people have tubes for tons of reasons and some of them are perfectly healthy. And tube or no tube, you cannot always tell by looking at me how I am feeling. Visible and invisible illnesses both have their pros and cons, and I only know what I know. While it is sometimes hard feeling like I need to justify that I’m actually sick with an invisible illness, it’s also nice to be able to hide it when I want to.
13. Regarding working and career: I feel like everything is on hold and I’m way behind. I know, I know, I’m still young and I have tons of time to go to school and figure my life out, but that doesn’t change the fact that it’s incredibly hard to watch everyone around me move on with their lives while I am occupied as a full time patient (the lawyer who wrote up my contract must be a genius because I have yet to find a loophole to get me out of this job!).
14. People would be surprised to know: I want to eat! And I get random cravings for foods that I used to love. I think people might also be surprised to realize just how much of our social culture is food-centric. It’s something you might not realize until you actually stop to think about it, or until you can’t eat anymore.
15. The hardest thing to accept about my new reality has been: sacrificing some of my independence and some of my goals in order to manage this illness that I didn’t ask for and don’t want. It’s also really hard to see the stress that my illness puts on my family and close friends.
16. Something I never thought I could do with my illness that I did was: be okay with a feeding tube. In my early days of gastroparesis when I would read stories about people with feeding tubes I thought it was the worst thing in the world! I thought it was so gross and I couldn’t ever imagine being tube-dependent without being completely miserable. I’m not completely miserable, though, and while it’s not glamorous, I’m okay with it and I’m living with it.
17. The commercials about my illness: Don’t exist.
18. Something I really miss doing since I was diagnosed is: going through my day carefree without planning everything around medications and symptoms.
19. It was really hard to have to give up: Teaching dance and going to school.
20. A new hobby I have taken up since my diagnosis is: Crochet!
21. If I could have one day of feeling normal again I would: have a really fun day with the people who are closest to me, the ones who have to watch me struggle. They deserve a normal day, too.
22. My illness has taught me: Patience. Empathy. Letting go. Advocating for my self. Hope. Joy. That it’s okay to not do what I think I’m ‘supposed’ to do. That the world is full of so many wonderful people.
23. Want to know a secret? One thing people say that gets under my skin is: This is such a sensitive question because when people say things that annoy me I know they have good intentions and I know that it’s hard to know what to say to someone in my situation. But here goes. It gets under my skin when people say “well you look good,” especially when I know I don’t. I know people mean well and just want to make me feel better, but it usually just makes me feel misunderstood. Here’s another thing that is hard to hear…my goal all through university was to go into occupational therapy, which is a two year full time masters program. At this point in time, this is not an option for me. My body could not handle such a program. I have accepted this reality and I realize that OT might not be in the cards for me. It really frustrates me, then, when I tell people this and they start telling me not to give up, that I’m still young, that I’ve got lots of time, that I can make it work. I know they mean well, but it ends up making me feel guilty for trying to come to terms with my reality.
24. But I love it when people: Let me know they are thinking of me. Make me feel accomplished for the things that I can still do. Share fun stories with me. Give me a chance to escape being a patient for a little while.
25. My favorite motto, scripture, quote that gets me through tough times is: “On particularly rough days when I’m sure I can’t possibly endure, I like to remind myself that my track record for getting through bad days so far is 100% and that’s pretty good.” – Vinny Genovesi
26. When someone is diagnosed I’d like to tell them: You can be okay. It’s hard and you need a lot of support, perseverance, and hope, but you can be okay. And find what works for you. There is no diet, medication regime, schedule or plan that works for everyone. Don’t be afraid to try new things because you never know what might turn things around for you.
27. Something that has surprised me about living with an illness is: How everyone is going through something. I always knew this theoretically, but once you open up about your own struggles, people open up about what they are going through. And soon enough you will realize that everyone has their struggles and everyone could use a little extra empathy and compassion.
28. The nicest thing someone did for me when I wasn’t feeling well was: So many things! I am so blessed with so many wonderful people in my world who are always letting me know that they are thinking of me.
29. I’m involved with Invisible Illness Week because: For too many years I felt like my illness was a personal failing, a character flaw, a weakness. I didn’t acknowledge that I had a chronic illness and I pushed myself harder than I should have trying to meet the expectations I had set too high for myself. Being open and public about my health has really helped me to accept and embrace my reality and that has made a huge difference to my overall well-being.
30. The fact that you read this list makes me feel: heard. Thank you.