30 Things About My Invisible Illness You May Not Know
by Stephanie Parkinson
1. The illnesses I live with are: Systemic Lupus Erythematosus (Lupus) and Fibromyalgia
2. I was diagnosed with them in the years: 1990-Lupus, 2002-Fibro
3. But I had symptoms since: 1989
4. The biggest adjustment I’ve had to make is: Giving up so MANY activities I love. Having to make either/or activity choices everyday single day.
5. Most people assume: That I am much healthier than I actually am, and that both of these conditions are treatable to the extent that allows for a "normal" daily lifestyle; that, because I CHOOSE to be upbeat and positive on a daily basis, I feel well.
6. The hardest part about mornings: When I first wake up, I try to go right back to sleep because it is the only time I do not feel pain. As I gradually awaken, the neurons in my brain start to receive the pain messages from throughout my body. During these first few moments, I assess the level of pain I will be starting this particular day with.
7. My favorite medical TV show is: Nurse Jackie--"it's a hoot!" and provides much comic relief.
8. A gadget I couldn’t live without is: My laptop. It is my link to the world--my main means of communication.
9. The hardest part about nights are: Falling asleep when I have taken the absolute maximum dosage for pain relief and I am still in incredible pain. And while I am awake and in pain, feeling such a sense of loss for things I cannot do, people I can not visit, feeling inadequate as a wife, mother, friend, sister-in-law, aunt, niece, cousin because there is so much more I would love to be able to do and can not.
10. Each day I take: 13 - 18 pills & vitamins. (No comments, please)
11. Regarding alternative treatments: I have been there, done that. Still don't rule out anything. What is most effective for me is massage therapy but since it is not covered by insurance, I am rarely able to seek treatment.
12. If I had to choose between an invisible illness or visible I would choose: Invisible. I know it is vanity but getting "cleaned up and dressed up" sometimes makes me feel good. And there are times when I am meeting new people or seeing "casual/business" acquaintances that I prefer not having my disability obvious.
13. Regarding work and employment: Miss it, wish I could pursue some of my career dreams--sometimes desperately. As an alternative, I volunteer. I give the best of my talents, education, and experience from my "previous life." I know absolutely and exactly what my strengths are and the areas of ANY volunteer organization where I can excel and make the most immediate and productive contribution. Because of my limitations, I know how to generate a great deal of organizational excellence with a high level of efficiency. As a person with a disability, I take a tremendous sense of pride in my volunteer work.
14. People would be surprised to know: The level of pain I am in. Daily, constantly, and unrelenting. And that all the medications available for my conditions only suppress the pain, never relieves it completely.
15. The hardest thing to accept about my new reality has been: Never being able to live a "fuller life". Giving up so many things, everyday, even minor things that I have to surrender.
16. Something I never thought I could do with my illness that I did was: Start a volunteer organization from ground up and after two years "graduate" to a different phase of life leaving behind a vibrant, highly organized, well trained, efficient and very effective organization that has gone on to grow and thrive.
17. The commercials about my illness: Are benign at best and mislead people to believe that there is a treatment much more effective than what is truly available.
18. Some things I really miss doing since I was diagnosed: Golf, volleyball, weekend getaways, art shows/fairs, jewelry design and other art projects.
19. It was really hard to have to give up: Golf and just basic walking/getting around.
20. A new hobby I have taken up since my diagnosis is: Volunteer Leadership and online support. Collecting Vintage jewelry.
21. If I could have one day of feeling normal again I would: Just keep moving! everywhere, doing everything with lots of walking, shopping, lunch out (of course, all of this done in the company of those I love). And end the day by hosting a huge indoor/outdoor dinner party ending with a poker game that would run way into the wee hours....mudslides included!
22. My illness has taught me: To embrace "where you are" in your life, accept the changes, make the most of what you CAN do.
23. Want to know a secret? Things people say that get under my skin:
Most Platitudes. For example: "God only gives you as much as you can handle"(give me a break--God is not sitting there doling out misery and challenges on an individual basis and keeping track! AND please do not assume that I CAN handle everything I am facing--walk in my shoes for awhile and see how YOU feel about that). or "There are so many people in the world who have it worse than you do" (you think I don't realize that! but what makes you think that their degree of suffering is supposed to make me feel better?). I actually could go on and on with with this question but won't! LOL. This will probably be a future Blog topic!
24. But I love it when people: Acknowledge that my life really does suck and that I/we have had an extraordinary amount of bad luck, challenges, tragedy, loss and pain---more than most people have in their lifetime. I love it when people say "It really does suck to be you!" because it is SO VERY TRUE and I laugh every time I hear this. And I do not hear this often enough.
25. My favorite motto, scripture, quote that gets me through tough times is:
"Sometimes the universe provides you an opportunity to make a change that you might not make otherwise" AND (from my beloved mother-in-law Alice,) "when things get really bad--that's when you have to be especially nice to each other"--I love that--we live that!
26. When someone is diagnosed I’d like to tell them: Well first of all "That Sucks" then...Take a deep breath, don't panic. Yes, your life is going to change, maybe a little, maybe a lot. With these illnesses symptoms vary quite a bit from person to person--- and they can ebb and flow. There are many wonderful people living with this condition who will be glad to share their experiences with you. If you have ANY questions at all, just ask, if I don't have the answer, I can point you in the right direction to get your answer.
27. Something that has surprised me about living with an illness is: The gratitude I felt after I acknowledged my inability to work and "keep up". I looked at the glass half full and thanked God for being able to spend more time with my family and realizing that even if I could not go-go-g0, I could still grow, contribute, learn, teach and most importantly Laugh and Love.
28. The nicest thing someone did for me when I wasn’t feeling well was:
Make a meal and drop it off for my family. It was enough to last two days and it provided such a welcome and much needed break for my husband, who bears the brunt of household duties including meal planning and preparation.
29. I’m involved with Invisible Illness Week because: We need to increase awareness. Big Time. Recently, someone I love, had a very disturbing incident while parked in a handicap space (with placard prominently displayed). He was verbally assaulted, his access to leave was blocked and he was afraid he might be physically assaulted. All because he has an invisible disability and was dealing with an ignorant person.
30. The fact that you read this list makes me feel: Like I am increasing awareness on many levels. Less invisible, more understood and productive. If one person gains insight and compassion after reading this, I will have succeeded.