Today, June 6th, is the Day of Visibility for those with an Invisible Illness. It is a day to embrace and uplift all people living with an invisible illness and let them know they ARE seen and cared for! The term invisible illness refers to any medical condition that is not outwardly visible to others, sometimes even the most highly trained healthcare professionals. Invisible illnesses encompass a broad range of conditions, including, but not limited to, heart conditions, asthma, diabetes, psychiatric illnesses, autoimmune disorders and even cancer.
For the Day of Visibility I have chosen to re-post the following questionnaire that I did last September for Invisible Illness Awareness Week. I know many of you read it back then but I hope you will take a moment to do so again. Also, if you live with or know someone with an invisible illness, I hope that you will give them a gentle hug or call/email them today to let them know that you DO 'see' them AND their illness and be sure to tell them how much you care. It means more than you can possibly know to hear those words.
ILLNESS YOU MAY NOT KNOW
1. The illness I live with is: Dysautonomia with Reflex Syncope - This means there is a dysfunction of my autonomic nervous system that causes me to pass out very frequently, especially if I stand suddenly or for more than a few minutes, often just seconds.
2. I was diagnosed with it in the year: 2007
3. But I had symptoms since: Adolescence
4. The biggest adjustment I’ve had to make is: that I'm homebound and mostly bedridden. I am no longer able to enjoy most of life's basic activities.
5. Most people assume: that if I'm sitting up, talking, smiling or carrying on a conversation that I'm 'feeling better' physically. Doing any of those things are very hard any time of the day or night for me now. I struggle just to talk sometimes.
6. The hardest part about mornings are: waking up and trying to move. I must take several medications before I can even get out of bed. After that, I must rest for a while and let them take effect before I am able to get up. Then, I must have assistance getting dressed, getting down the stairs and into my recliner where I will stay ALL DAY - if I'm able to get down there at all!
7. My favorite medical TV show is: none really. I don't watch these much anymore. It reminds me too much of things I can't do any longer. I worked in the medical field for nearly 20 years and now, because of my illness, I can't.
8. A gadget I couldn’t live without is: probably my laptop because it is my sole connection to the outside world except through my family. I also must have my wheelchair in order to get around most days.
9. The hardest part about nights are: the excruciating pain I often endure and my constant struggle with insomnia. I am always exhausted even if I sleep a few hours. I NEVER sleep more than 1-2 hours at a time without waking up.
10. Each day I take __ pills & vitamins. Let's just say it's a lot and leave it that!
11. Regarding alternative treatments I: am relying on my team of doctors to advise me best on what to do.
12. If I had to choose between an invisible illness or visible I would choose: to leave it to the Lord. This isn't a choice I would make. They are both equally tough, I suppose.
13. Regarding working and career: I am now completely disabled and have been on Social Security Disability Insurance (SSDI) for about a year and a half. I was approved the very first time I applied, which was a complete God-thing, and I am very, very grateful. However, I truly miss working in the medical field. I did so for almost 20 years and I really miss it a lot!
14. People would be surprised to know: that sitting at home all day, every day is not all it's cracked up to be. 'Bed-rest' is NOT fun after about the first week! I would trade this for just about anything!
15. The hardest thing to accept about my new reality has been: not being able to be out and about, participating in the lives of my family. I really miss seeing all they do and being a part of it.
16. Something I never thought I could do with my illness that I did was: start this blog and make so many internet friends! There are many who have been such a wonderful source of strength, love and encouragement.
17. The commercials about my illness: do not exist because it is so rare. :0(
18. Something I really miss doing since I was diagnosed is: pretty much everything, especially all the things that involve my family. It is not easy being stuck at home all the time.
19. It was really hard to have to give up: control. God has that. Well, at least I keep giving it to Him on a daily basis.
20. A new hobby I have taken up since my diagnosis is: Blogging, Facebook and message boards. I also really enjoy buying and selling on Craig's List with the help of my husband. We have gotten some really good deals.
21. If I could have one day of feeling normal again I would: have just a normal day with my family. I would chose a Friday so I could go to the football game where I would watch my youngest daughter march and I would cheer from the top of the bleachers! After the game, I would go out to dinner with my entire family and then spend the rest of the night out on the town!
22. My illness has taught me: how truly blessed I am! It has taught me to not take anything in life for granted and that my husband really does love me unconditionally.
23. Want to know a secret? One thing people say that really gets under my skin is: 'But you SO good, you must be getting better.' OR 'You are not in the bed, so you must be better.'
24. But I love it when people: ask questions about my illness out of a genuine desire to know more about it and to understand how I truly feel.
25. My favorite motto, scripture, quote that gets me through tough times is: Scripture from Jeremiah 29:11 11 For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.
26. When someone is diagnosed I’d like to tell them: to learn as much about their illness as possible and be their own advocate! I would also tell them they are not alone. Find other people who have the same illness to encourage them. Find support through their local community support groups, internet support groups, message boards, etc. You do not have to go it alone. Above all, trust in the Lord to see you through! People will let you down, but He never fails!
27. Something that has surprised me about living with an illness is: how many people try so hard to determine how I 'caught' this disease and/or how I should 'treat' it or how the doctors should be treating me. I also constantly hear how I should go to another doctor and another until I find someone who can make me well. *sigh*
28. The nicest thing someone did for me when I wasn’t feeling well was: This just can't be limited to just one person or occasion! There have been so many people who have sent notes and/or gifts, called and come to visit me. Others who have made us dinner, brought flowers, cleaned our house and helped in our yard. The stories about these things are endless and I am truly forever grateful!
29. I’m involved with Invisible Illness Week because: I want to bring much more awareness to my particular illness. Plus, I desperately want people to know that just because an illness is not seen, does not mean it does not exist or is not as intrusive as a visible one. There is so much people do not understand about these illnesses and that is why awareness is important.
30. The fact that you read this list makes me feel: honored and very grateful that you cared enough to take the time to do so. I truly appreciate it, more than you'll ever know!
P.S. For those of you who have been praying for my mom, I wanted to let you know she is still in the hospital and is doing fairly well. All the tests they have done so far have ruled out anything related to her GI tract. However, they still have stool cultures pending. They are also doing a whole host of test that have nothing to do with the GI tract. They have already diagnosed her with Pneumonia and are administering breathing treatments every few hours. She is in a good bit of pain which they think is from the Pneumonia. I just spoke with her not too long ago and she sounded pretty good. She was a little loopy from the meds but otherwise she was in good spirits. We really appreciate your kind words of encouragement and all of your prayers and would really appreciate it if you continued to lift her up in prayer. Thanks so very much!