30 Things About My Invisible Illness

01. The illnesses I live with are ->
Systemic Lupus Erythematosus and fibromyalgia.

02. I was diagnosed with it in the year...
Lupus - First suspected in 1991...not officially diagnosed until 2009. I was undiagnosed for 18 years.
Fibromyalgia - 2006. I was 18.

03. I've had symptoms since ->
I've had an abnormally low white count and platelet count my whole life. Those were the first known symptoms. Ever since I can remember, I have felt so very tired and sore. I thought it was normal until I was eight and people told me it wasn't.


04. The biggest adjustment I’ve had to make is ->
My whole life, I've always relied on myself. Always independent. I always took care of others. I was raising other people's children when I was a child. And now, I've had to adjust to needing people. It's a lot harder than it sounds.

05. Most people assume ->
So many people -- even my family -- have asked: "Are you SURE you have lupus?" People assume that if I don't believe I have it, I can magically wish it away. Well, if that worked...not only would I not have lupus, but I would also make sure everything else in my world -- and the people I care about -- was alright.

06. The hardest part about mornings are ->
The hardest part about the mornings is waking up feeling like I have breakbone fever. And then knowing that I've got to get up and live my life, even though I feel like shit, because it's the only one I've got. I'm very determined.

07. My favorite medical TV show is ->
I actually like Grey's Anatomy.

08. A gadget I couldn’t live without is ->
My computer. My writing is what I do. It'd be a lot harder to use a pen and paper with my aching bones.

09. The hardest part about nights are ->
The hardest part about the night is being a night owl and feeling to crappy to go out and do what I want to do. I mean, I used to just...be one with the nighttime. Now night's are just lonely.

10. Each day I take ->
For lupus, I take: Plaquinil and prednisone. (Hoping to come off the prednisone soon, but a recent flare has prevented that so far.)

11. Regarding alternative treatments ->
The best alternative treatments I've found for lupus are: love, happiness, and SUGAR!

12. If I had to choose between an invisible illness or visible illness, I would choose ->
Sick is sick is sick. Sometimes lupus is visible. Just ask those who get the rashes.

13. Regarding working and career ->
I am so determined to do everything I want to do in this life. And damn it, I'm going to find a way somehow, some way. Even if I have to take different paths, my destinations will remain the same. Right now, I go to university online and work from home. And I'll continue to do that as long as I have to, because I am NOT going to be the bitch of any disease. I will get the education and the life I deserve, regardless of my illness. Luckily, I have the best professors, academic advisers, and bosses, who not only understand my illness but support me. Not to mention, my family and friends. Everyone contributes to my success in their own ways.

14. People would be surprised to know ->
I am fucking scared all of the time. Everyday, I am terrified, because most days, I feel like I'm dying. (And I've nearly died on more than one occasion, so I do have a clue what it's like.) But...I'm so stubborn, I just keep going. When I was 12, I had peritonitis, kidney failure, blood poisoning, septic shock...and I was forced to walk. And I did it, because I didn't have a choice. I was stubborn. And being stubborn is what keeps me going. Not bravery. Unless being stubborn is a form of bravery.

15. The hardest thing to accept about my new reality has been ->
It's not a new reality. I've felt this way my whole life. It's just now I have an official diagnosis and it's (FINALLY) being treated.

16. Something I never thought I could do with my illness that I did was ->
Live. And sometimes I do it damn well. Other times not, but I still do it. I live. And I like living, even if lupus makes it suck-ish sometimes.

17. The commercials about my illness ->
I haven't seen any lupus commercials. I have seen some for fibromyalgia.

18. Something I really miss doing since I was diagnosed is ->
I miss the sunlight. I miss it so much.I was a child of the outdoors. I didn't know I could get this pale until my illness forced me away from the sun. (Seriously. I'm Cherokee. I laugh at my pale skin, because it's still novel to me.)

19. It was really hard to have to give up ->
I've had to give up school and society in the past. But the sunlight is the kicker, man.

20. A new hobby I have taken up since my diagnosis is ->
Fashion illustration!!

21. If I could have one day of feeling normal again ->
I don't know what it feels like to be normal, apparently. But if I did -- even for one day -- I'd be happy.

22. My illness has taught me ->
It's a constant reminder that life is so beautiful. It really is. Even when you feel like shit, and you're scared, and you're in a hospital, sad, and you're dying...existing is a unique and wonderful experience that should never be taken for granted. I also know who my real friends are. I know who loves me. And that's precious beyond words.

23. Want to know a secret? ->
Having an illness like lupus means not having control of your own body. That's really the most scary thing about it. But if you can live in the moment, and appreciate those moments -- even the ones that suck -- you won't regret anything.

24. I love it when people ->
I love it when people shower me with love. And not the shallow kind, mind you. But the real kind. The kind that I can feel even when they don't say it. That's some of the best medicine there is.

25. My favorite motto, scripture, quote that gets me through tough times is ->
"Life is wasted on the living." - Douglas Adams.
And it is. The dead appreciate life more than we do. We mock it constantly.

26. When someone is diagnosed, I'd like to tell them ->
I'd want them to know that that feeling of paralyzing terror doesn't have to be permanent.

27. Something that has surprised me about living with an illness is ->
Life still goes on.

28. The nicest thing someone did for me while I wasn't feeling well was ->
Honestly, just a good hug does wonders for a soul.

29. I'm involved with Invisible Awareness Week because ->
I think it would be too much to say I'm involved as such. That would be a bit arrogant. BUT, I filled out this questionnaire, because I had some things to say. And maybe someone out there needs to hear (or read, as it may be) what I needed to spit out.

30. The fact that you read this makes me feel ->
If you read what I had to say, you're my friend.