Posts Tagged Chronic Disease
I was diagnosed with Rheumatoid Arthritis or Rheumatoid Autoimmune Disease when I was 29. It’s an awkward age to be told you have a chronic disease.
There was so much I hadn’t yet accomplished. At the time, I was single, struggling to get my business off the ground, training for a marathon, and pushing thoughts of kids and marriage into the future. And then, a diagnosis of RA threw all that up in the air.
I feel like the pieces are still settling, four years later.
I got back together with a long-term boyfriend, largely because of my diagnosis. When I needed him, he was there without question. All the issues we’d had in the past paled to how much we obviously cared for each other, and that remains true today.
I pushed through a lot of ups and down and pain to cross the finish line of my first marathon. Today, I still run. Though training for a second marathon has faltered twice due to pain, I still have it in the back of my mind as a goal.
I tried to manage my business, while attempting to lower stress (doctors orders, and so much easier said than done in the world of start-ups!). The business is now doing better than ever, but stress management remains a constant struggle.
And then there’s kids…
I always figured I’d be a mother someday. I was never in a rush about it, but down the line, raising a family was always something I imagined for myself. After my diagnosis of RA, I suddenly found myself in a new reality.
When you have a name for the pain you’ve been experiencing, it becomes unavoidably real. There was no more blaming running or snowboard injuries. I couldn’t blindly keep pushing myself. I had pain walking and writing, bone erosions that no amount of medication could erase, extreme fatigue that was even causing me to fall asleep at work, a whacked-out GI tract that led to weight loss and avoiding eating all together, and depression because I had no idea why any of the above were happening to me. With a diagnosis came the answer of why, but it also brought the necessity to slow everything down and focus on getting better.
The new reality also meant being placed on strong drugs to control my symptoms, including a chemotherapy drug that is used to induce abortions in ectopic pregnancies. This particular drug requires women to be off of it for an extended period of time before even attempting to get pregnant.
Suddenly, I was far less sure I would ever be a parent. Four years of focusing on my health, coming to terms with living with chronic disease, and finding a new normal has given me the space to seriously revisit the question of parenthood.
Huge questions still exist for me. These are questions that only those of us living with chronic illness and our partners can understand.
Will I be healthy enough to go through pregnancy? If I ween off my RA drugs, will I return to the level of pain I was at pre-diagnosis? Will I be able to stay off the drugs long enough to breastfeed? If I can successfully have one child, will I be able to have another? Will pregnancy make my symptoms worse or better? Will post-pregnancy change my disease trajectory? Will the drugs I’m on be as effective post pregnancy? Will my RA slow me down as a parent? Will I pass the genetic disposition for autoimmune diseases on to my kids?
To help me navigate the complexities of this big decision, I’m reading Arthritis, Pregnancy and the Path to Parenthood by Suzie Edward May.
I’ve only just started the book, but I already identify with Suzie so well. She was diagnosed at 27 before having kids. The book offers a lot of hope, but also non-sugar-coated truth. I’ll give a more complete review when I finish it.
In the meantime, can anyone weigh in on what factors you looked at when deciding to become a parent while living with a chronic disease?
First off, my apologies for being off the radar for, well, months.
My work has been busy and I’ve been trying to finish up my second novel. (If anyone has any interest in checking out my first book, you can find it here.)
It’s left me with little motivation to write this blog after busy days that include a lot of time in front of the computer. In fact, I’ve spent many nights these past few months just being exhausted and having a great relationship with Netflix.
On to the good stuff.
I was recently at a dinner and found out through that a person close to me might have Lyme Disease. I was listening to her symptoms – sore joints, fatigue, depression – and told her I understand how a lot of these symptoms feel and that she should call me if I want to talk.
To which she responded, “But you’re better, right?”
She’s not the first person I’ve heard this from. I’ve heard it from friends and family, those who should really understand chronic disease better. And I get it. They see me and I look healthy — I go to work, get exercise, write, travel. I don’t complain like I used to before I had a diagnosis.
I’m better, right?
Well, not exactly. “Better” suggests “cured” and I think that’s how most people mean it. But in the world of chronic disease and Rheumatoid Arthritis, cured is not really part of our reality (Yet! So much exciting medical research is happening right now!).
So how can you balance educating people, but not causing those close to you worry -OR- come off as complaining?
Honestly, I’m not sure.
I responded by saying that my drug therapy allows me to manage my disease and I feel much, much better than I did before treatment. This is the truth. I balance pain, fatigue, new limits, and, yes, even depression from time to time. I tweak my drug regimen constantly to take the least amount of drugs possible while managing my pain. I take two heavy-duty drugs weekly just to keep a semi-normal life and I get blood panels regularly to make sure my liver’s keeping up.
I don’t feel cured, but I do feel better.
So, what about you? How do you handle the “Aren’t you better yet?” line?
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!
Mine hit me right around the time that my Raynaud’s decided to show it’s full colors (no really, my hands were fantastic colors of red, white and purple). Why? Probably because I was 14 and my hormones were raging.
Whatever reason, come awkward adolescence my hands began to shake. It was worsened when trying to hold something, particularly something that was either extraordinarily delicate or scalding. It was made even worse when there was an audience or I was nervous or embarrassed. As you can imagine, class presentations were my worst nightmare.
And needless to say, awkward adolescence just got a whole lot worse…
On really bad days my head would try to shake itself off my neck. But mostly, it was my hands, with their omnipresent jitter.
Unlike when I was diagnosed with Rheumatoid Arthritis, I knew exactly what I was in for. About half the aunts and uncles on my mom’s side have these same shakes. In fact, many people around the world do. It’s called an Essential Tremor and it can cause your hands, head or voice to shake. We don’t know why and we don’t have a cure (sound familiar?).
One aunt has a particularly bad rendition – her head never pausing. So I was filled with a sense of dread and acceptance when I noticed them in myself; I was one of the unlucky ones, stuck with the shakes and destined to have it for the rest of my life.
To my surprise, by age 16 my Familial Essential Tremor had all but disappeared. Occasionally my hands would shake a bit when I was especially nervous, but it was nothing compared to what it had been a few years earlier. People stopped pointing it out. I was ecstatic.
It’s basically been a non-issue since then. But now suddenly, at the age of 31, I seem to be a bit shakier. It’s not bad enough that it’s affecting my head, but it’s been bad enough to spill hot coffee while pouring, to have people comment and stare yet again, and for me to have flashbacks back to those rough adolescent years.
Like RA and Raynaud’s Phenomenon, there is no cure for an essential tremor. It’s just … a condition. A genetic mutation, according to the Mayo Clinic.
So, what can I do? Well, avoid caffeine, alcohol and stressful situations, for starters. But, since that’s not going to happen for me right now, I’m sticking to hoping that it’ll mysteriously disappear, the reaction to a 30-something’s hormone cycle, like it did when I was 16.
I think I can speak for many of us RAers when I say that living with a chronic disease means constantly being sold a Coachella festival worth of the healing powers of alternative medicine, therapies, yoga, salt candles, mantras, green juice, and so much more.
But they do all start sounding suspiciously the same. Do you have a chronic disease, depression, fatigue, allergies, the propensity for bad decisions, financial woes, and stress? Look no further than acai berries! They cure EVERYTHING and make you live forever!
So when my boyfriend sent me the brilliant tongue-in-cheek site, New Age Generator, I fell in love. Use it to create the copy for your own holistic site. Or to find gems of wisdom such as this:
As you believe, you will enter into infinite choice that transcends understanding. Faith healing may be the solution to what’s holding you back from a breathtaking explosion of peace. Through aromatherapy, our third eyes are opened by synchronicity.
Also of note, Wisdom of Chopra (as in Deepak Chopra). It generates all the Deepak wisdom you could ever hope for, like this:
Experiential truth is the foundation of new potentiality.
You’re welcome. 🙂
I recently finished Lean In, an inspiring call for girls to become business leaders by Facebook COO Sheryl Sandberg. As a woman in the technology industry, I see firsthand the absence of women – not just in leadership roles, but in the whole field. Generally, the women that I do meet are not leading, but are filling secretarial or HR positions. So I absolutely encourage everyone to read this book and consider encouraging the girls and women in your life to believe in their potential as leaders.
BUT, that’s not why I’m writing this post. I’m writing because as I read Sheryl’s insistence that workplaces need to make better efforts to accommodate pregnant women and new moms, or that women shouldn’t just drop out of the workforce the minute they become – or are thinking about becoming – pregnant, I couldn’t help but seeing the parallels to people struggling with chronic disease or disability.
So, I would like to encourage not just women and girls to Lean In, but all of us struggling with disease, disability, fatigue or depression to Lean In as well.
When I was first diagnosed with Rheumatoid Autoimmune Disease (Rheumatoid Arthritis), I read some stark and discouraging statistics. Headlines in the Huffington Post screamed “Rheumatoid Arthritis Unemployment: 1 In 5 With Disease Stop Working 2 Years After Diagnosis.” The Mayo Clinic goes on to pronounce that within five years, that number becomes 1 in 3. While medication is beginning to change this trend by allowing RAers to avoid severe disability and maintain their jobs, I think we need to take a hard look at these numbers and encourage more accommodations in the workplace and more “leaning in” from those struggling with RA.
Of course, early unemployment does not just effect those with RA or autoimmune diseases. The U.S. Department of Labor says people with disabilities are more than twice as likely to be unemployed and only about 20 percent of those with disabilities (versus nearly 70 percent without) are participating in the labor force at all.
This is a shame because people with chronic diseases are more likely to suffer from depression (and vice versa), and losing your sense of purpose through career can add to that likeliness. A career can take you out of the job of being sick and distract you, reminding you that there is way more to life than being a patient.
So, here’s what I want to see a la Sheryl Sandberg:
- Unless there is no other option, people are often discouraged to share their disease or disability with their employer. The thinking goes, your employer will be more likely to think you’re not up to a given task, and more likely to fire you or pass you over for a promotion. Employers need to be more open with employees, and be willing to have these tough conversations and make appropriate accommodations that allow people with disease of disability to thrive at work still. This could mean later starts in the morning, more flexibility on hours to accommodate doctor’s appointments, extra tools in the workplace to aid those with disability or chronic pain, more breaks during the day to reset, better mental health and wellness programs… Whatever it means for the individual, it needs to be a conversation that can take place without fear of losing ones job or professional potential. (Reminds me of the ladies who are scared to share with employers that they might want to have a family one day.)
- When diagnosed with a chronic disease or disability, you suddenly find yourself with an extra job (sort of like parenthood, but, in this case, you didn’t want it at all). This new job could be full or part time depending on the severity of your situation. Either way, it is difficult to find yourself suddenly trying to manage this new job and your old one. You may find yourself sacrificing projects, hours or quality at work to deal with your new “job”. You suddenly have doctor’s appointments, long calls with insurance companies and need more time to do everything… Without owning up to your situation and having understanding about it from your employer, it’s hard to balance this without suddenly appearing more flaky.
- We need to change the culture of shame that surrounds chronic disease (including mental disease) and disability. As a society, we can not keep blaming people for their disease or depression. We need to stop discouraging sufferers from speaking up about it. We need to encourage people to openly seek help and thrive. The pink ribbon campaign has done a great job starting the conversation on breast cancer and encouraging those suffering from it to share their stories and their families to openly support them. Let’s do the same for the 23.5 million (or 50 million according to AARDA) in the U.S. suffering from autoimmune diseases, the 14.8 million Americans suffering from major depression (and many millions more suffering from general depression or anxiety disorders), and the 50 million Americans living with disabilities.
Got any thoughts on how else we could help people with chronic disease and disabilities stay in the workplace? I’d love to hear them!
11 Things My Son Taught Me about Life & Business