What does it mean to be a victim? It means you feel powerless and completely out of control of your situation.
On days that your RA flares, your chronic disease rears it’s head, your cancer makes a comeback, you hurt, how do you avoid falling into the victim mindset?
For me, it’s days where my feet don’t cooperate and I fall out of bed and have to stumble around my apartment for a bit until they “warm” up. It’s days that my fingers cramp and my wrists ache so much it sucks to type or play video games. It’s days where I know exercising would help, but it sounds like the hardest thing to do.
On those days, it’s easy to want to play the victim card. Why have I been dealt this? Please take care of me. There’s nothing I can do, so I won’t do anything at all.
There are probably some benefits to being the victim every now and again. It means you’re more likely to ask for, and accept, help. It means you might take it easy. Maybe, just maybe, it means you’ll stop being so hard on yourself from taking a break (you are a victim after all).
But there’s also a whole host of negatives to letting your life or disease let you sink into a victim mentality. It makes you feel weak. I can’t play videogames because my RA is so bad. versus I need a break from videogames right now because my RA is flaring, but there’s plenty of other things I can do.
It makes you focus on the negative. My feet are so stiff, I fall out of bed in the morning. versus My treatment is working so well, it’s rare that I have these days where my feet are so stiff I fall out of bed in the morning.
It makes you angry. Why did this happen to me? What did I do to deserve this? versus Some things, like my getting RA, are out of my control, but I’m not my RA and I’m strong enough to deal with the symptoms.
It causes a spiral of depression. I can’t. Take pity on me. I need help. Why doesn’t anyone care or notice my pain? versus I’m having a bad day and could use a little extra help and support today. This is the stuff of victims. The stuff of sitting on your couch feeling sorry for yourself. This is the stuff of depression.
And depression is a BIG deal, perhaps especially for those with RA and other chronic diseases. It has been proven to worsen symptoms and those with RA have a higher chance of being depressed than those without (gee, wonder why?).
So how do you avoid being a victim?
When you’re feeling powerless, try to think of 1-3 things you do have power over. For example: I can’t control my flare causing my hands to swell and stiffen, but I can talk to my doctor about adjusting my medication, eat a diet that could help reduce swelling, and go out to a movie to distract myself.
Try to re-frame your inner dialogue. Look at the examples above. Try adding qualifiers such as “right now” to remind yourself that your situation is temporary. Remind yourself of your strength and the things that are going well.
Ask for help when you need it. Don’t just believe you deserve help and then feel sorry for yourself when you don’t get it. Tap into your network and accept support from those who love you.
Do you have any other tips for avoiding the victim mentality? I’d love to hear them!
You may recall my last post when I was reeling about United Healthcare’s decision to raise Enbrel from a tier 2 drug ($30 per month copay) to tier 4 ($250 per month). Right before Christmas.
Well, if United Healthcare is Scrooge, Enbrel is Santa.
After hearing the news about the drug costs going up, I sent an appeal to United. It was quickly denied. I then approached my doctor, who was hesitant to switch me to Humira, which had been newly deemed affordable by my fickle insurance. Apparently, going off a drug can make it lose it’s efficacy if you decide to get back on later. And since Enbrel’s working for me, my doc didn’t want to make the change.
Instead, my doctor recommended calling the Enbrel Support Group. I had gotten info on this when I first got on Enbrel, but because my co-pay was inexpensive, I didn’t take advantage of it.
Well, it turns out Enbrel Support has a program that will assist you in your copays. As the kind man on the other end of the phone told me (and, yes, he actually sounded like Santa): “We know Enbrel can be expensive. We want to help where we can.” I almost cried.
He signed me up for an Enbrel Support Card and told me they are starting a brand new reimbursement policy to circumvent UHC’s new stance on not taking “coupons” or support cards as payment. For the first six months, they’ll pay your full copay. After that, they cover all but $10 per month.
This all definitely seemed too good to be true. I didn’t really believe I’d ever be paid back when I refilled my prescription this week and forked over $250.
But now, sure enough, I received a check in the mail for the full amount. Thank you Enbrel Support!!
Seriously, if you’re in the position of struggling to pay your Enbrel copays, check them out: http://www.enbrel.com/ENBREL-support-card-program.jspx
And since my last post was so Grinch-y, here’s one to lighten the mood. Thanks Carla!
Originally posted on Carla's Corner:
As it’s now only a few days until Christmas, I thought I’d reprise last year’s post (to be sung, hummed, or laughed at to the tune of “Twelve Days of Christmas”).
On the twelfth day of Christmas, RA brought to me:
12 joints a-flaring,
11 scripts a-filling,
10 toes a-throbbing,
9 labs a-drawing,
8 workdays missing,
7 doctors billing,
6 X-rays to be taken,
5 new pills,
4 side effects,
3 new tests,
2 swollen knees,
And a new D-M-A-R-D.
“And God bless us, every one.” Tim Cratchit, A Christmas Carol by Charles Dickens
Ah, late December. A time of beautiful lights, giving, and the great health insurance scramble.
As co-founder of my company, I’m lucky enough to have a huge impact on choosing the health insurance we provide. One of the deciding factors for me is being able to get my Rheumatoid Arthritis drugs at a low co-pay. Through United Healthcare, it’s been $10 per month for methotrexate, $10 per month for folic acid, and $30 per month for Enbrel.
In other words, $50 a month for drugs. A reasonable-enough price to pay for my health. It is the number one reason we decided to keep our UHC plan for 2015.
So shock me, shock me, shock me (Any Empire Records fans? Read on, there’s a gif for you below.) when I get a letter saying that beginning January 1, 2015, Enbrel will be considered a “Tier 4″ drug and will not be eligible for the Enbrel Assistance program. After some digging, I found out that this means it’s going up to $250 per month with no opportunity to enroll in any payment assistance programs Enbrel provides.
What? Merry Christmas to you too, United Healthcare.
Their advice? Try another drug.
That’s all good and fine. They’re willing to cover Humira or Cimzia, but I’m feeling pretty violated. I know violated may seem like a strong word for this situation, but that’s how it’s feeling. I’m being forced to put an unknown drug into my body because my healthcare has made an arbitrary change to their coverage. Enbrel is a known quantity for me. It’s effective in treating my RA, side effects are pretty minimal for me, and my body is used to it. Humira and Cimzia are not.
Not to mention, my rheumatologist claims that though the risk of switching is “probably pretty minimal”, there is a risk that I could lose the efficacy of Enbrel if I ever need it again. Joy!
So, have any of you RA folks made the change from Enbrel to Humira or Cimzia? How did it go? Are any of you on Humira or Cimzia? How did you like it?
Thanks for all your input and Happy Holidays to you all (in the non-grinchy, healthcare-trying-to-screw-you way, of course!)
Oh man, I’ve been neglecting this blog! Sorry guys. There’s nothing like that three month rheumatologist appointment to remind me to get writing!
I’ve been thinking a lot about the journey I’ve been on with my RA. I went from the fear that came with diagnosis, to dogmatic hope and determination that I could get rid of said pesky diagnosis, to bleak acceptance, to a sort of new normal.
That new normal is what I want to talk about. I think it probably looks different for everybody.
But, at any rate, here’s what my new normal means for me:
- it means I normally operate with an acceptance of my disease – it’s chronic, it’s painful, it ebbs and flows
- it means I still hold onto the hope that better scientific research may lead to better treatments and possibly a cure
- it means that I constantly remind myself that “chronic” is just a word. Diseases change and even chronic ones may go away
- it means that I am almost ALWAYS uncomfortably aware of my body. At moments when I want to focus, my feet are screaming (like recently standing during the funeral of a friend…I wanted to be focused and be there for all the people who loved him, but there were my inflamed feet, in pain and begging for my attention). At moments when I want to be serene and zen (like in yoga classes when my wrists are acting up).
- it means that some mornings my feet and hands don’t work the way they should. They’re frozen, sore, and just not ready to start the day
- it means feeling that I’m constantly balancing the desire for understanding with the desire to not burden others by complaining. Usually I stay quiet.
- it means I have a new relationship with some powerful drugs. Drugs with life-changing results and uncomfortable side effects
- it means I am a whole lot more patient with myself and others
- it means that not a day goes by when I’m not grateful for my body, my mind, my life and my loved ones
What does your new normal mean for you?
Rude Awakening posted some great answers to the “30 Things You May Not Know About My Invisible Illness” questionaire in honor of Invisible Illness week: Invisible Illness Week: 30 Things You May Not Know….
She also reminded me, it’s that time of the year again! My answers are below.
30 Things You May Not Know About My Invisible Illness
1. The illness I live with is: Rheumatoid Arthritis (plus Raynaud’s Phenomenon and Chilblains)
2. I was diagnosed with it in the year: 2012
3. But I had symptoms since: I noticed what I now believe were RA symptoms as far back as 2009. I’ve had Raynaud’s since at least age 14, though possibly much longer. Chilblains began in 2012.
4. The biggest adjustment I’ve had to make is: Slowing down more often to give my body a break.
5. Most people assume: I’m fine now that I’ve been to the doctor, because I’ve gained weight back and look healthy. They don’t realize that I’m treating symptoms that are chronic and occasionally flare even with treatment – I haven’t “cured” my disease.
6. The hardest part about mornings is: This absolutely depends on the day! Some days mornings are the best, some I have so much fatigue and stiffness I don’t want to move.
7. My favorite medical TV show is: Scrubs!
8. A gadget I couldn’t live without is: Comfy flats and boots, a jar opener, and warm socks and gloves!
9. The hardest part about nights is: Some days it’s fatigue, some it’s pain, some it’s just knowing I have to get up the next morning, some are totally fine.
10. Each day I take 4-15 pills & vitamins.
11. Regarding alternative treatments I: I love acupuncture and find it helpful and relaxing. Would if I could get more massages! I watch my diet and have cut down on many inflammatory foods, including dairy and gluten. I incorporate anti-inflammatory food/supplements into my diet as much as possible: ginger, turmeric, cinnamon, omega 3s. Perhaps most importantly, I try to do something active most days. On rough days, it may just be a very short walk, on good days, it’s runs, swims, boot camps, dance or yoga.
12. If I had to choose between an invisible illness or visible I would choose: Invisible, even though it can be frustrating. Some days I look and feel normal and am able to forget about RA. Those are the best. Plus, being a private person, I prefer being able to choose whether or not I want to share my illness with others. Its invisibility affords me that choice.
13. Regarding working and career: I’m an entrepreneur working on a tech start-up that I co-founded. This means I likely work harder under more stressful conditions than my health and doctor would like. It also means I’m able to work flexible hours that allow me to make my doctor’s appointments and work from home on bad days (even from bed sometimes!). I try to remember to take time to myself to rest and replenish and focus on being healthy.
14. People would be surprised to know: I agree with Rude Awakenings: “Fatigue is as debilitating as pain – some days more so. And I feel like a definition is needed here. Fatigue = flu-like symptoms, not simply being sleepy.” On days with bad fatigue I struggle to do anything, including just talking to the people I love.
15. The hardest thing to accept about my new reality has been: Relying on drugs to feel well and accepting my body’s limitations on rough days.
16. Something I never thought I could do with my illness that I did was: I agree with Rude Awakenings here too: “Talk about it so openly.” When I was first diagnosed, I didn’t think I’d be educating people on my illness or reaching out to strangers!
17. The commercials about my illness: All feature older adults, seemingly in their 60s. They perpetuate the myth that Rheumatoid Arthritis is the same as Osteoarthristis and mainly effects older populations.
18. Something I really miss doing since I was diagnosed is: Not having to wonder how an activity, meal, or drink will effect my RA or interact with my meds. Not having to plan my life and trips around bi-weekly medication, bi-monthly blood tests, and tri-monthly doctor appointments.
19. It was really hard to have to give up: Control over my body. Oh, and dairy, gluten, alcohol and heels (I still enjoy all four in moderation).
20. A new hobby I have taken up since my diagnosis is: Blogging!
21. If I could have one day of feeling normal again I would: Similar to last year – I would just go, go, go all day and night, not worrying about lack of sleep, stress on my body, any of that.
22. My illness has taught me: Celebrate the good days and all that my body does for me. Always be patient and kind to others – invisible illnesses are a good reminder that you really don’t know what others are struggling with!
23. Want to know a secret? One thing people say that gets under my skin is: Agree with Rude Awakening again, absolutely this: “When people equate their grandmother’s osteoarthritis (or their own!) in her wrist to my autoimmune disease.”
24. But I love it when people: Ask me how I’m doing even if I look fine and want to learn more. I also love when people share their own experiences with autoimmune diseases or offer to put me in touch with friends who also have RA.
25. My favorite motto, scripture, quote that gets me through tough times is: I have many. Here’s a kinda nerdy one: “We take what we can get, Champ, and we do our best with it.” – Cordelia Chase. Another one along the same vein: “Do what you can, where you are, with what you have.” – Teddy Roosevelt
26. When someone is diagnosed I’d like to tell them: It gets better. The pain will decrease when you find the right meds. The loneliness will start to dissipate when others with RA come out of the woodwork and you find online communities to connect with.
27. Something that has surprised me about living with an illness is: Most people, even those close to you, do not want to think or hear about your illness. Everyone prefers to think that all’s well.
28. The nicest thing someone did for me when I wasn’t feeling well was: My boyfriend does this well: we’ll order in and watch a movie, and he won’t let me entertain thoughts of guilt over all that I didn’t accomplish that day.
29. I’m involved with Invisible Illness Week because: I want to create more awareness and understanding of autoimmune diseases. There’s so much that is unknown, underfunded and misunderstood.
30. The fact that you read this list makes me feel: Grateful. Thank you for taking the time, and for your support of Invisible Illness Week!