The Other Side of Invisibility

Generally speaking, I’m not big into selfies. I prefer to take pics of my son and my dogs. That said, friends on social media will likely be familiar with the “progression of mediocre selfies” series; multiple attempts at family self-portraits taken during our adventures. Our crappy selfie skills have become a family punch line. But truth be told, I adore their candid silliness. ūüėä

For the last 18 months, I’ve been sick enough that I’ve largely disengaged from my previous everyday life. I don’t have to tell you all that, of course, because I’ve been absent here. Pain and fatigue are quite a tag team, as many of you know. They’ve largely limited my ability to write in complete sentences. But I’m slowly writing a post on my continuing pharmaceutical roulette, and I hope to feel well enough to get back to a more regular rhythm soon. I cannot thank you enough for sticking it out with me. 

At this point, you may be thinking “Girl, you weren’t kidding about not writing coherently. I mean, how do those two paragraphs even relate to each other?” But bear with me, because I took a mediocre selfie for this post. 

My selfie skills haven’t improved, but the caption says it all. When you’re chronically sick and mostly homebound, you can feel invisible. When everyone around you is racing to work, you can feel invisible. When your daily accomplishments include “got out of bed”, “slept for more than 3 hours straight”, or “made it to the doctor”, you can feel invisible. 

Much has been written about the frustration of the invisible chronic illness. But less is said about the invisibility we feel.  We are so often forced to the sidelines, as the world spins around us. So, this selfie proves, to me and to you, that I’m still here. Even without a job. Even without makeup. And it’s no accident that I’m holding a crochet project. If I take it slow and use the right tools, crochet is good exercise for my joints. It’s also a calming influence on my mind. I feel accomplished when I complete projects — in crochet, in the kitchen, or with my writing. And that’s crucial for my type-A personality. 

Is the feeling the same as closing a big deal or leading a strategy session with a business partner? As crossing a half-marathon finish line? As singing a solo in front of a crowd? Nope. But like my selfie, these hobbies remind me of where I am on life’s journey. They help me remember that I am here. And no matter what, I’m grateful for that. ‚úĆÔłŹ

Heart To Heart Thoughts From Inside My Chronic Life

  • bedvsout-selfie

    The look changes. The diseases do not. On the left, in my natural habitat. On the right,¬†after spending¬†energy to “clean up”. Oh, and sunglasses hide a lot. ūüėČ

    Rheumatoid Arthritis is one of 100+ types of arthritis.

  • But it’s also not “arthritis”, as I knew it pre-diagnosis.
  • Yes, it’s joint inflammation, immobility, and deformity.
  • But it is not cartilage degeneration, like osteoarthritis.
  • Which is common starting in middle age.
  • RA is an autoimmune disease.
  • This means my body is attacking itself.
  • Specifically, the lining of my joints.
  • RA¬†can be¬†systemic, which means¬†it shows itself well beyond¬†the joints.
  • My eyes, lungs, heart, and autonomic functions are all impacted.
  • And¬†RA affects¬†people¬†in every¬†age group.
  • Including over 300,000 kids in the US.
  • I’m always in pain. Like, 24/7.
  • But the fatigue, both from RA and fibromyalgia, is sometimes just as hard to handle.
  • My outward appearance generally doesn’t match how I feel.
  • I evaluate every task, every day, to determine whether to perform as normal, perform with modifications, or skip.
  • Yes, this includes showers, which zap my energy.
  • Some days, I can manage a short one in the evening before bed.
  • Some days, I can’t.
  • I contemplate my toothbrush twice a day.
  • Sometimes, I can’t manage the back and forth motion required for my manual brush.
  • Other times, the vibration of my electric toothbrush is unbearable.
  • This constant evaluation is mentally exhausting.
  • Fatigue does not mean “in need of a nap”.
  • It’s limb heaviness.
  • It’s brain fog.
  • It’s like having a bad flu, constantly.
  • At least once a day, I break down in tears because of the pain.
  • Pain keeps me from sleep 3-5 nights a week.
  • Opioids do not take it away.
  • Most days, they dull the pain.
  • And are necessary for me to function at all.
  • I use them in combination with other therapies and treatments.
  • So don’t be surprised if I smell like menthol.
  • It’s just the Bio-Freeze.
  • Medical marijuana is not legal where I live.
  • But it’s on the ballot again.
  • I’m scared that millions of chronic pain patients like me are getting lost.
  • While we debate the serious and separate issue of opioid addiction.
  • I have a permanent disabled parking permit.
  • Which I only use when I need it.
  • I have received angry stares and comments because I don’t “look” sick enough to have one.
  • If you have heard about a treatment, I have tried it.
  • Yes, this includes medications, alternative therapies, diets, protein shakes, vitamins, balms, and yoga.
  • Even if it worked for your mother/sister/uncle/grandpa/spouse/roommate, autoimmune disease affects everyone differently.
  • And though I use some of them, my diseases continue to be mostly unresponsive to treatment.
  • Save the unconditional love and support of my wife and son, a treatment that work wonders.
  • Despite all of these challenges, I try to stay positive, especially online.
  • I share photos of wonderful vacations I take with my wife and son.
  • But I don’t share the activities I skip to rest in bed.
  • Or the number of days I cannot even bear to get out of my pajamas.
  • The same goes for work, entertaining, date nights, soccer matches, and well, everything.
  • Many days, my bed is both my office and my dinner table.
  • And my computer and TV are my views to the outside world.
  • So I often feel apart and alone.
  • If I cancel plans we’ve made, it’s because I’m in really bad shape.
  • It is never because you are not important to me.
  • And it breaks my heart that you might think otherwise.
  • That you might stop inviting, stop calling, stop writing‚Ķ
  • I want to do everything I could do before I was diagnosed.
  • But I can’t.
  • And resetting my own expectations is the hardest task of all.
  • I often feel guilty saying “no”.
  • I often feel like a failure when I can’t do what others can do.
  • Seven years in, I’m starting to accept that I need a different balance.
  • “No” allows me to be better in control of my chronic life.
  • So my disease no longer controls me.
  • It’s hard, and I’m far from perfect.
  • But no matter what comes, I plan on enjoying the hell out of this crazy, beautiful life.
  • As it is, not as I wish it was.
  • For as long as possible.

Thank you for listening. Namaste.

To Family, Friends and Caregivers of the Chronically Ill

My soul mate (and biggest supporter) chillaxing with me at my last Rituxan infusion.

My soul mate (and biggest supporter) chillaxing with me at my last Rituxan infusion.

I read a great piece today on The Mighty that I wanted to share with you all. It discusses the best ways loved ones can help the chronically ill people in their lives. You can find the article here.

Thanks to Danielle Myers, co-author of the CrossRoad Trippers blog, for a well-articulated, thoughtful post. So often, the people we love struggle to understand how to help us. I especially related to¬†“don’t make¬†assumptions” and “I still want to feel useful”. I¬†have said those exact words more than once. ūüôā What resonates most with you?¬†Anything else you wish people understood about your¬†chronic life?

P.S.¬†If you’re not reading The Mighty, a site devoted to¬†stories of disease and disability,¬†I definitely recommend checking it out. Lots of goodness there!

What Am I Worth?

Recently, I had an informal dinner with a member of my new leadership team, who we’ll call Victoria*. The subject of layoffs came up. It’s no surprise that the tech company I work for is cutting back its workforce, so we were discussing it and the potential impact on our business. I immediately thought of my own experience in July 2013, when my role was eliminated as part of a broad reorganization.

Since I just started in my current role 2.5 months ago, I thought I’d share my story with her….part of the “getting to know you” process. Back in 2013, I felt fortunate to be offered two alternate positions immediately, a rare luxury among the 17 affected people on my team. I knew I’d be taking one of those two roles, versus looking for a possible better fit. You see, I had returned to work from disability in late 2012. While I was out, my role was backfilled. When I got my doctor’s approval to return, I was “on the clock”. I had only 30 days to find a new gig. Needless to say, I was not anxious to repeat the uncertainty of that experience less than a year later, even with the offered 60 days of search time. After I explained this — my story with a happy ending — she paused thoughtfully for a moment. Her response left me speechless.

“I’m surprised they would offer you a choice like that, since you were just out on disability.”

Stunned, I immediately launched into my complete company resume, ticking off each accomplishment. Presumably, Victoria knew about my career successes, and brought me onto the team because of them. Her comment made me feel that I had to defend myself. That regardless of my achievements, my disability leave downgraded my stock as an employee.

I’m proud that in that moment, I defended myself. But I reacted from my back foot, extracting every bit of evidence of my professional worth. Here’s what I wish I had said:

Victoria, I have spent most of the last decade dedicated to our company. I take great pride in the work I do, and in what I have accomplished here. For more than half of my 8.5 years, I have also battled Rheumatoid Arthritis. I have won awards, received promotions, and regularly earned the highest review marks possible, both pre and post diagnosis. I am an asset, and my work earned me the choices I was given. My disability status was not, and should not be, a factor. Your comment suggests that I should have been given fewer options simply because I took company-offered leave when I was too sick to work. That is horribly insulting, both to me and to our company.

I realize that people make mistakes, that they say things without thinking. This did not feel like that. My view of Victoria, and of my place on the team, immediately changed. I am having a hard time believing that my experience won’t be affected by her view that “disabled = less deserving”. It seems assumed that I cannot produce the same level of results as my peers, because I have physical limitations. I wrote awhile back about my typical “Brains versus Brawn” response at work. Until now, it’s been largely effective, and has allowed people to get more comfortable with my disability. But for the first time, I’m concerned that¬†I am viewed¬†as an anchor, not as an asset.

* Pseudonym to protect her anonymity

Brains Versus Brawn

I love this article by Christine Miserandino. It’s amazing to me how differently we spoonies are treated at times. I relate completely to Christine’s story in this article.

First, a disclaimer: I am blessed to work for a great company with fantastic people. I am grateful every day for what I have. Flexibility and modifications allow me to continue working at the same career I enjoyed for 15 years prior to my diagnosis. I am now officially a “home office” employee, so I can work with my feet up or from bed when I must. I can often flex my hours, taking breaks as my eyes or joints require. I have set limits on my travel, which every manager I¬†have had has respected. I am fully aware that at some point, all of this may not be enough, but for the last 5 years, I have mostly made it work. Pun intended. Duh.

That said, people¬†have changed¬†with me. When I first “came out” with¬†my disease¬†at work, things were suddenly, and subtly, different. Colleagues¬†hesitated to include me on¬†meeting invitations and virtual teams,¬†concerned that they were¬†“putting too much on me”. Managers tiptoed around me, offering a placating “How are you DOING?”, complete with¬†the pitying look and¬†the ever-present, but unspoken “Are you still going to be able to do your job?”

This is by no means a universal reaction, just one I never witnessed until I was “out” with my chronic illness. When it occurs, I know¬†those who do it have¬†the best of intentions. They just aren’t sure how to handle the new, sick me. They aren’t sure what to do when they see me attending events, shuffling gingerly to my seat,¬†juggling my food at the buffet¬†along with¬†my cane, or¬†sitting¬†my wheelchair. To help them understand, I started offering up a smirk and this one-liner:

“The company hired me for my brains, not my brawn, and my brain hasn’t changed.”

As a self-declared nerd and as someone who, ahem, is not known for lifting heavy objects, I usually get a laugh. More often than not, it helps my colleagues feel more comfortable with my illness.¬†I know¬†I’m lucky to work in a career where this response can be both funny and true. If brawn was a big part of my job,¬†as it is with many, I would be unable to perform in my former capacity. Though I most often utter it at work, this line is also effective with my doctor, with friends, and with family.

It’s not a perfect response, but when faced with others’ trepidation about my illness, it does the trick for me. Do you experience these moments? If so, what techniques work for you?

Invisible Illness Week: 30 Things You May Not Know…

Reposting in honor of Invisible Illness Week, 2014. It’s interesting to re-read my thoughts from 2012, to see how things have changed, or not. Happiness and peace are a daily work in progress, but I remain as committed as ever to living in the moment, and being grateful for what I have. I am using Eastern medicine regularly now, and my diet remains a big part of my journey toward health. I¬†am back to work, working too hard, and trying to listen to my body and find balance. And “House” is still my favorite medical drama! ūüôā

************************************************

In support of Invisible Illness Week, I answered their “30 things” meme, to raise awareness.¬† Hopefully, it answers questions some of you have about my journey with chronic illness — especially since I’ve been too sick to do much writing on my RA autobiography lately.¬† I’d love to hear your thoughts, and if you (or someone you love) is living with an invisible illness, I’d love to have you join the conversation with your own answers!¬† There are a number of fantastic speakers at the virtual conference this week, which you can reach from the link above.¬† If you have time, I encourage you to check it out.¬† Hope to¬†see you there!

30 Things You May Not Know About My Invisible Illness

1. The illness I live with is: Rheumatoid Arthritis (plus Fibromyalgia, Sjogren’s Syndrome and Celiac Disease)
2. I was diagnosed with it in the year: 2010
3. But I had symptoms since: RA symptoms since 2009, autoimmune issues since alopecia in childhood.
4. The biggest adjustment I’ve had to make is: I no longer know how I’ll feel hour to hour, day to day.  I may wake up unable to move, or I may be okay.  As a planner, it’s hard to reconcile that.
5. Most people assume: Whatever happens, I’ll handle it.
6. The hardest part about mornings is: Moving. I’m like the tin man.
7. My favorite medical TV show is: House!!!
8. A gadget I couldn’t live without is: My rollator, my wheelchair, my cane, my heating pads, my knee wedge pillow, and my jar opener. (Sorry, I’ve collected quite a few over time.)
9. The hardest part about nights is: Unrelenting pain.
10. Each day I take 22 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: Use some creams, drink some teas, and eat natural foods.  I have not yet tried others, but am open to them.
12. If I had to choose between an invisible illness or visible I would choose: As hard as it is sometimes, I‚Äôd choose invisible.¬† There are days when I ‚Äúlook‚ÄĚ normal, which gives me the opportunity to keep my illnesses to myself.¬† When I‚Äôm in a wheelchair or using my rollator, people look a bit too long, and often ask what‚Äôs wrong.¬† It helps me to understand the strength of those that must deal with that every day.
13. Regarding working and career: I’m in transition.  I spent the first two years after diagnosis trying to move forward in my career as if nothing had changed.  Finally, I got so sick that I could no longer work at all, and I’ve been on disability for 8 months.  Now, I just want to be well enough to work again in some capacity.  Whatever that looks like, I am certain the career I build now will look quite different.
14. People would be surprised to know: I am in pain 100% of the time, but my fatigue is as debilitating as the pain ‚Äď some days more so. And I feel like a definition is needed here.¬† Fatigue = flu-like symptoms every day, not simply being sleepy.
15. The hardest thing to accept about my new reality has been: That my body is often incapable of doing what my heart and mind want to accomplish.
16. Something I never thought I could do with my illness that I did was: Talk about it so openly.  I even started a blog on the topic!
17. The commercials about my illness: Are infuriating. Most actors in them are 50+, though women in their 30s, like me, are the most likely RA sufferers.  Commercials also imply greater remission rates than patients actually realize.
18. Something I really miss doing since I was diagnosed is: Having the energy to fully enjoy life with my partner and son.  I cherish every second I have with them.
19. It was really hard to have to give up: Knowing how I‚Äôd feel tomorrow.¬† Oh, and bread.¬† ūüôā
20. A new hobby I have taken up since my diagnosis is: Meditation.
21. If I could have one day of feeling normal again I would: See #18.
22. My illness has taught me: To be happy with today, no matter what it looks like.  I no longer wait for some event in the future to make me happy. I look at my many blessings today, and focus my on those. I am happy and at peace every day.
23. Want to know a secret? One thing people say that gets under my skin is: When people equate their grandmother’s osteoarthritis in her wrist to my autoimmune disease.
24. But I love it when people: Ask about my illness, and genuinely want to learn more about the disease, or about me.
25. My favorite motto, scripture, quote that gets me through tough times is: ¬†‚ÄúPeace is the result of retraining your mind to process life as it is, rather than as you think it should be.‚ÄĚ ‚Äď Wayne W. Dyer
26. When someone is diagnosed I’d like to tell them: That they’re not alone.  There are fantastic bloggers out there, amazing resource sites full of information, and great communities where you can learn and connect with wonderful people who will help you through the shock of the initial diagnosis.  You’ll find your own strength as you go, and this virtual community can help in so many ways. I lean on and learn a ton from them.
27. Something that has surprised me about living with an illness is: As they’ve made me weaker physically, my illnesses have made me stronger mentally.  As a result of dealing with serious chronic illness, I have far more courage of my convictions in all aspects of my life.
28. The nicest thing someone did for me when I wasn’t feeling well was: Seeing me, and not just my illnesses.  Despite my wheelchair/rollator/cane/limp, I am the same person, and it can be easy to forget that.  Those closest to me have not.
29. I’m involved with Invisible Illness Week because: Awareness is necessary.  So many suffer with invisible illnesses, and many are misunderstood, underfunded, and in need of both for research and new therapies.
30. The fact that you read this list makes me feel: So grateful.  Thank you for taking the time, and for your support of Invisible Illness Week!

3 Things The Chronically Ill Wish Their Loved Ones Knew

Wanted to¬†share this post from the amazing Toni Bernhard, author of the Turning Straw Into Gold¬†column at Psychology Today¬†and author of the brilliant How to Be Sick. If you are chronically ill, or love someone who is, please read her work. She’s amazing, as evidenced here:

http://www.psychologytoday.com/blog/turning-straw-gold/201405/3-things-the-chronically-ill-wish-their-loved-ones-knew

Just wow. As Lora can certainly tell you, I continue to struggle with all three of these, and as usual, Toni absolutely nails the discussion of every single one of them.  When I have these feelings, I try to acknowledge and accept them, then let them go, and focus on what I have today, versus what I have lost. The support and love of family, friends, and the RA/AI/chronically ill community helps tremendously as well.

I hope the wisdom in Toni’s post helps you know you’re not alone, and her writings guide you toward finding your own inner peace.