I follow a blog called Interstitial Cystitis: Catherine’s Journey and she did a blog entry based on a questionnaire she found on an invisible illness website. I read it and thought it was a great way to better inform people about what it is like to live with Sjögren’s syndrome, which is usually an invisible illness. It’s ironic because I just talked about invisible illness in my previous blog entry on scooters and Disney. So here is my questionnaire. Please feel free to copy and paste and to your own. Awareness is critical!
In honor of National Invisible Chronic Illness Awareness Week (September 9-15, 2013), they asked those of us suffering with chronic, invisible illness to answer the question: “30 Things You May Not Know About My Invisible Illness”. Here are mine:
- The illness(es) I live with are: Sjögren’s syndrome. Also Factor V Leiden, Hypothyroidism, PCOS, Asthma, ?Interstitial Cystitis, Esophageal Motility Disorder
- I was diagnosed with it (Sjögren’s) in the year: 2011
- But I had symptoms since: 2007-2008
- The biggest adjustment I’ve had to make is: Being out of work and on disability; having to take rest periods throughout the day.
- Most people assume: A lot. Specifically that I must be feeling well because I “look” fine and that I am taking advantage of the system because I am young and disabled/on Medicare.
- The hardest part about mornings are: Figuring out how I am going to prioritize my day.
- My favorite medical TV show is: Grey’s Anatomy.
- A gadget I couldn’t live without is: My laptop. It makes writing easier and keeps me connected to the world on days I cannot leave the house.
- The hardest part about nights are: Pain. My pain is usually worse at night. And not sleeping.
- Each day I take: At least 15 pills/supplements. And that is an improvement.
- Regarding alternative treatments: I have been doing this for about 10 months. I am not as convinced that alternative medicine can “cure” autoimmune illnesses but I have had significant improvement with a lot of my issues so I think alternative medicine is a critical aspect of my treatment plan.
- If I had to choose between an invisible illness or visible I would choose: Neither. This is a dumb question.
- Regarding working and career: I miss it. I miss caring for other people on a daily basis and I miss the intellectual challenge of working in the medical field. I enjoy writing but I have come to find out that I enjoyed “going” to work.
- People would be surprised to know: I get sick of hearing people complain sometimes. Not my friends who confide in me about something, even about minor matters. But I get sick of people complaining on Facebook about the stupidest things. I try to sit back and remember that everyone’s issues are different and important to them. It bothers me when people are always (note that I said always) complaining about their kids. Be grateful you have them.
- The hardest thing to accept about my new reality has been: That I will never be cured.
- Something I never thought I could do with my illness that I did was: Write a book which is currently being published!
- The commercials about my illness: Don’t exist!
- Something I really miss doing since I was diagnosed is: Being able to just “get up and go” whenever I want; being spontaneous; working. Most of all I miss waking up and physically feeling good.
- It was really hard to have to give up: Some of the foods I used to enjoy; my nursing job.
- A new hobby I have taken up since my diagnosis is: Writing!
- If I could have one day of feeling normal again I would: There are SO many things! But since it is only one day, I would go skydiving.
- My illness has taught me: What it is like to truly physically suffer. It has taught me to be grateful and humble. It has taught me the value of true friendships and the necessity of keeping toxic, negative people out of my life. It has taught me who my real friends are. It has taught me to appreciate the everyday events in life.
- Want to know a secret? One thing people say that gets under my skin is: Advice on how to handle my illness. This is a fine line. I am OK when somebody mentions something to me once i.e.: a Paleo diet. But it ticks me off when they bring it up over and over again. It also upsets me beyond all reason when someone I know tries to sell me some “miracle cure”. Completely classless. Luckily, it doesn’t happen often. There are a few other things but those are the biggies.
- But I love it when people: Call me or check in via e-mail. Spontaneous visits. I love it when people tell me that my writing has made a difference in their life.
- My favorite motto, scripture, quote that gets me through tough times is: Way too many to list. If you go to my blog’s Facebook page, you will see what I mean.
- When someone is diagnosed I’d like to tell them: Never, ever give up.
- Something that has surprised me about living with an illness is: That I am happier now than before I was diagnosed.
- The nicest thing someone did for me when I wasn’t feeling well was: There is no one thing because so many people have done so much for me. Things that I appreciate a lot though include: offering to bring me lunch or dinner, offering a ride to an appointment, sending me regular mail (like in the mailbox!), making me laugh, talking to me about anything besides me being sick.
- I’m involved with Invisible Awareness Week because: I think it’s important to help raise awareness and educate others about what those of us living with invisible illness(es) are really going through each and every day.
- The fact that you read this list makes me feel: Hopeful!
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Hi. Fellow SS sufferer here. Also RA, osteoarthritis (hey, I'm 55, whadya' expect?), Stage III/IV renal failure (thanks Sjogren's). LOTS of hand, foot, L knee pain and lots of exhaustion. Work part to full time from home (RN/BSN working in data management in pharma research as private contractor). Getting a dx took decades, literally. Have had bones removed from both thumbs, meniscus repair on knee, deQuervain's surgery R wrist. Also have hypermobility syndrome. Doesn't help. Sorry – this sounds so down, but really I'm pretty proud I've done as well as I have as long as I have. Gonna have to pursue disability one day soonish, but it takes so long & I will miss my $$$!!!
Hi Jennifer!
Thanks for finding your way to my blog. I think it may have been you who added me on Twitter today as well. Sorry about all of your issues! I have met quite a few people now with renal failure from Sjogren's. I had an abnormal creat. a few months ago that sent everyone into a panic but it normalized. Now I just get checked periodically.
That is really great that you are still working. I do understand what a big feat that is. Is your place hiring? 🙂
Re: is my place hiring – 'my place' would be me and a woman I contract with. 4 years ago I lost my job at the contract research org I worked for (after 16 years there) after a merger. One of the people for whom my company did work wanted me to keep doing work for her, so I ended up contracting with her directly. It was truly a miraculous thing, since there is nowhere within 5 hours of me where I could do what I had been doing, and now I get to work at home literally lying on my bed propped up with pillows as needed. I can take breaks as needed (most of the time), and though I don't get benefits, the pay is remarkable. I'm very grateful.
I realized I forgot to tell you about the most interesting Sjogren's adventure thus far. I'm on Plaquenil and Methotrexate for the SS. I also had been getting Rituxan infusions every 6 months. After my infusions last January, we discovered that I had no immunoglobulins (IgG & IgM especially), so I can't fight infection. Since then, I've had to have an appendectomy (can ya' believe it???), and I've been trying to get over a simple cold for over 10 weeks. I'm much better, but still fighting chest congestion daily. SS is truly quite the adventure.