I May Have An Invisible Illness, But I'm Not Invisible!

National Invisible Chronic Illness Awareness Week is held annually in September in the US and is part of a worldwide effort to bring together people who live with invisible chronic illness and those who love them. It's something that can benefit chronic illness sufferers further afield too. 

In 2009 thousands of people with invisible illnesses took part in a project to enlighten people about their conditions. Here is mine.


1. The illness I live with is: asthma
2. I was diagnosed with it in the year: 2008_
3. But I had symptoms since: my teenage years.
4. The biggest adjustment I’ve had to make is: carrying my emergency medication everywhere I go and accepting that it is a dangerous illness
5. Most people assume: either that asthma is very minor, that it stops you doing anything interesting or active or that it is imminently fatal.
6. The hardest part about mornings are: sometimes I can be very chesty early on and you never quite know what the day will be like and everything takes a bit longer than I'd like!
7. My favorite medical TV show is: I don’t watch them!
8. A gadget I couldn’t live without is: medically speaking - my spacer which makes sure I get all my medication into my lungs. Otherwise my computer!
9. The hardest part about nights are: sleeping propped up enough not to start wheezing and having to give up my preferred habit of sleeping with an open window.
10. Each day I take: 1 pill & vitamins plus an inhaler twice a day every day and I always carry another, of different medication, at all times in case of an attack or increased symptoms.
11. Regarding alternative treatments I am trying to learn good breathing techniques.
12. If I had to choose between an invisible illness or visible I would choose: invisible because I see so many people judging those with visible problems – I might lack understanding from others but at least I don’t suffer their assumptions!
13. Regarding working and career: I have a rewarding career which does not affect my illness
14. People would be surprised to know: that I concealed (even to myself to an extent) quite bad symptoms for a good couple of years
15. The hardest thing to accept about my new reality has been: that while I have not had a really bad attack I have to live with the fact that asthma is serious and that people do die from it.
16 Something I never thought I could do with my illness that I did was: be more active than before
17. The commercials about my illness: well, in the UK we don't really have commercials about illness!
18. Something I really miss doing since I was diagnosed is: sleeping with the window open and carrying a tiny clutch!
19. It was really hard to have to give up: I'm lucky, apart from the window thing, I haven't (so far) had to give up much!
20. A new hobby I have taken up since my diagnosis is: gardening
21. If I could have one day of feeling normal again I would: walk through a field of flowers on a cold, windy day (most of my triggers in one go)
22. My illness has taught me: to appreciate good days, and that getting treatment is a bloomin' good idea!
23. Want to know a secret? One thing people say that gets under my skin is: "oh, my friend/cousin/loved one died of an asthma attack" - really not helpful, you know?
24. But I love it when people: just take it in their stride and don't stare at me when I have to take my inhaler in public!
25. My favorite motto that gets me through tough times is: I didn't have one, so I just found this: "To live is not breathing it is action" Jean-Jacques Rousseau - it reminds me that, despite asthma, I still have a fulfilling and active life.
26. When someone is diagnosed I’d like to tell them: don't panic, take care of your symptoms, be aware of what your lungs are telling you, ask for help if you need it, take your medication and carry on with the rest of your life!
27. Something that has surprised me about living with an illness is: that most people don't know anything about it!
28. The nicest thing someone did for me when I wasn’t feeling well was: give me a hug
29. I’m involved with Invisible Illness Week because: Just because we don't always show symptoms doesn't mean we are perfectly fine
30. The fact that you read this list makes me feel: happy that you are interested and hopeful that you will think about all the people who may have an illness that you can't see