1. The illness I live with is: Rheumatoid Arthritis (RA), Gastroparesis (GP), Primary Biliary Cirrhosis (PBC), Fibromyalgia (FM). I do live with others as well (like asthma, hypothyroid, etc), but these are the main diseases that cause me chronic pain, fatigue and illness every day.
2. I was diagnosed with it in the year: RA-2006, PBC-2008, GP-2012, FM-1989
3. But I had symptoms since: RA-2005, PBC-2007, GP-2010, FM-1986
4. The biggest adjustment I’ve had to make is: Leaving my career, moving to full time disability, and losing so much of my independence.
5. Most people assume: When people who don’t know me look at me they can’t see my multiple illnesses. Even though I use an a electric wheelchair or a cane/walker, people tend to assume I’m just lazy or overweight, and not really sick.
6. The hardest part about mornings are: Getting out of bed and preparing for the day. I usually sleep very late as I can’t function on less that 10-12 hours of sleep a day.
7. My favorite medical TV show is: I don’t usually watch medical shows. I prefer cooking shows or things that lighten my mood.
8. A gadget I couldn’t live without is: My iPad. It’s become too difficult to use a laptop, keyboard and mouse but my iPad keeps me connected to the world since I am very housebound due to the illnesses. I can type with two fingers even when my hands are locked from RA.
9. The hardest part about nights are: Getting a good night sleep. I have always had sleep problems and my brain likes to think and obsess as soon as I turn off the light. Pain and nausea often make it hard to sleep well too.
10. Each day I take approximately 30 pills & vitamins (plus injections, pain patches, etc).
11. Regarding alternative treatments I: believe they can help make a difference in daily life, even if they can’t cure a disease. I think we should always be open to new ideas and alternative treatments to help us out when we are sick.
12. If I had to choose between an invisible illness or visible I would choose: I’m not sure ANY illness is a good trade for any other illness.
13. Regarding working and career: I miss my career and I miss working. So many people think, “oh it must be nice to be home and not have to work.” Sure, it would be if I was healthy, active and won the lottery. But living on a partial salary, not being able to take care off yourself, go places you want or see friends and family is awful. Not to mention that being sick IS a full time job all in itself just trying to keep yourself as healthy as possible and all your medical appointments, doctor visits, medical bill paid, etc in order. I would give just about anything to have my life and career back and be able to work again.
14. People would be surprised to know: Even if I look like I am doing okay, I am still hiding large amounts of pain and sickness from you. I do my best to look as normal as possible for you so that you aren’t uncomfortable being around me. Creating that facade means that I load up on many medications before I go out to see you and when I come home, I’m exhausted from the energy it took to keep it up while we were together. This is a habit I will probably never be able to stop.
15. The hardest thing to accept about my new reality has been: losing my independence. I used to be the girl who could do anything, take care of everyone and never miss a beat. I can’t even take a shower or brush may hair most days without help anymore. It’s incredibly difficult to have to rely on others for help all the time.
16. Something I never thought I could do with my illness that I did was: I started to write… And when I started to write, I started connecting with other people living with chronic illness. And the emails and notes that I get from people telling me that I made them feel like someone understood, that they weren’t alone, warmed my heart and made me feel like despite being so sick and not being able to do much, I could still reach out into the world through my words and make a difference in someone else’s life.
17. The commercials about my illness: drive me crazy! Particularly the RA ones. They say to the world, “just take a shot and your problems are solved and you can climb mountains!” But they don’t talk about what happens when their drugs stop working and the fact that even though we talk these nasty drugs and chemotherapy medications that cause horrible side effects… NONE of them stop the progression of RA, they just slow it down. So if you have aggressive RA, like I do, the medications can help but the disease continues to destroy your joints and your body a little bit more every day. And if you’re like me and all the medications stop working, then life becomes pretty unbearable while RA continues to push through you eating your joints up. Living with any disease is not as easy as the pharmaceutical companies make it look, no matter what disease they are advertising.
18. Something I really miss doing since I was diagnosed is: being able to spend fun time going out with my husband and my friends and family. Being chronically ill is a very lonely thing to live with every day.
19. It was really hard to have to give up: my spontaneity, my independence and my hobbies. I try to find new ways to do things, bit I really miss not being able to just say “hey I want to do X” and get up and do it. With chronic illness everything has to be planned so that you can maximize what little energy or abilities you have that day. And even then I find so many things are still not possible with such a broken and tired body.
20. A new hobby I have taken up since my diagnosis is: I have found I can paint and/or draw digitally with just one finger on the iPad. I’ve really enjoyed experimenting and creating new kinds of artwork. My first digital painting is even being sold as a “collector card” to help raise money for RA research and awareness. I can’t do it every day, but it’s still a new way to express myself when I am feeling up to it.
21. If I could have one day of feeling normal again I would: spend the whole day going out and doing fun things…maybe go to Disneyworld or something where I could just walk, run, play and have fun and use up all that glorious energy while spending time with my husband and friends and family.
22. My illness has taught me: that despite how sick I am and how much of my life and myself I have lost to these diseases, I still can find positive things to do and ways to smile every day. You can still find happiness with chronic, severe illness…. You just have to work a little harder at it than before.
23. Want to know a secret? One thing people say that gets under my skin is: I think I am most frustrated by people who say “I sure hope you’re feeling better by now” but they don’t mean it in a friendly way, they mean it as if to say “your illness really annoys me, so I hope you’re feeling better by now so I don’t have to deal with it anymore.” It doesn’t take long to figure out who cares and who finds your illness “annoying.”
24. But I love it when people: do something to show me they care. It could be a note or email, a small gift or even just a phone call to say “I heard you were having a rough time and I thought I’d call to cheer you up.” It doesn’t take much to make someone feel loved or cared about, but true friends will find a small way to let you know.
25. My favorite motto, scripture, quote that gets me through tough times is:
“I believe that if, at the end of it all, according to our abilities, we have done something to make others a little happier, and something to make ourselves a little happier, that is about the best we can do. To make others less happy is a crime. To make ourselves unhappy is where all crime starts. We must try to contribute joy to the world. That is true no matter what our problems, our health, our circumstances. We must try. I didn’t always know this, and am happy I lived long enough to find it out.” - Roger Ebert
26. When someone is diagnosed I’d like to tell them: Do your own research, learn about your disease, you are your best advocate. Learn everything you can and never take no for an answer. If a doctor doesn’t seem to care or listen, find another. There are always more doctors and the good ones will make you feel good when you leave their office, even if it’s a bad prognosis or checkup. And as for you, don’t give up…find your own path to happiness. It may be a different path than you originally thought and you may have to swallow your pride a bit and try new things, but you CAN find peace and happiness within your new life with your illness. It just takes a good bit of work and a lot of hope. They come up with new treatments every day. Today may not be your lucky day, but another day soon just might be. So hold on and don’t ever give up. And never, ever lose hope.
27. Something that has surprised me about living with an illness is: how strong you find you are when you have no choice except to BE strong. And also that being an optimist never goes away, even when you’re sick, depressed and falling apart…there’s still a small piece of that hope in there somewhere, you just have to find it and nurture it to make it grow again.
28. The nicest thing someone did for me when I wasn’t feeling well was: So many things! I’ve received care packages from friends. My mom cooked a Christmas dinner that was all Gastroparesis friendly so I felt normal for a night. My husband just loving me and taking care of me and the house every day. Friends sending happy notes or funny emails so that I will smile. It doesn’t take much and you find out who really cares when you get sick. So many “friends” disappear but let them go, focus on the ones that stick around and are there for you no matter what. Those are the people that deserve the love and attention you have to give.
29. I’m involved with Invisible Illness Week because: it’s so important to raise awareness and help people understand that millions of people live with chronic illness every day and you can’t see it. Don’t judge people by how they look or appear, they may be fighting battles that you could never imagine in their every day lives. Be kind, be gentle and never be afraid to try and make someone smile. It might be just the thing they need to make it through one more day.
30. The fact that you read this list makes me feel: like you care, that you want to understand more of what it is like to live with chronic illness and that if you are also living with chronic illness, then I hope it made you feel like you’re not alone.
Hugs to all. Thank you for reading and I hope you all post your responses to these same questions as well so I can learn about you. If you do, please post a link to your responses in the comment section below.