The Impossible Choices People With Autoimmune Diseases Face

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For those of us struggling with autoimmune disease, Glenn Frey’s death hits especially hard. In case you haven’t heard, Mr. Frey had rheumatoid arthritis (RA) for 15 years. According to his manager, Irving Azoff, Mr. Frey had long taken drugs to slow the progression of his RA and ulcerative colitis, which caused him to contract pneumonia and caused his death. RA medications called “biologic agents” work by targeting the body’s immune system, and experts suggest a suppressed immune system could have led to Mr. Frey’s lethal combination of illnesses.

This news illustrated the often impossible choices RA and other autoimmune patients face, and it was a vivid reminder of my own harrowing experience. The biologic drugs I take for severe RA also weaken my immune system. In early 2012, I found myself unable to fight off that most common of winter illnesses, the flu. After 24 hours of rapid decline, my (now) wife forced me to the emergency room. There, I was diagnosed with septic shock. I required life-saving measures. ER doctors inserted a central line on the spot, because I couldn’t wait for an operating room. As my blood pressure dropped to dangerously low levels, I was given vasopressors to artificially boost it. I spent the next few days in the ICU, and the next few months recovering. We were later told that, without treatment, I would very likely have died within 24 hours.

This is the catch-22 of current treatments for autoimmune disease. Without biologic drugs, many people with these diseases cannot perform daily tasks or even get out of bed. With them, our immune systems are suppressed, so we are at a greater risk of developing other illnesses. And if we do get sick, our immune systems are so weakened that our bodies have a hard time fighting back. This is far from the only issue. Biologics are costly and generally not an affordable choice for those without insurance. Even with insurance, out-of-pocket costs can be prohibitive, and insurance approvals can take weeks or even months.

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Jessica (left) and her wife

These medications do not cure our diseases. Despite the plethora of advertisements, biologic drugs often provide only partial relief, and sometimes no relief at all. To date, I have failed almost every biologic available for RA, going through a months-long trial-and-error process for each new one I try. Given all of this, it’s easy to understand the love/hate relationship autoimmune patients have with these powerful drugs.

Thousands of RA stories, like Mr. Frey’s and my own, motivated me to start an awareness-raising blog in January 2011. They are why I constantly seek new Eastern and Western options for treating my disease. They are why I fuel my body with the best nutrition I can every day, to give it the best chance to fight back. They are why I practice gratitude daily and strive for a healthy, positive mindset.

Biologic treatments are a key part of my toolkit in the fight against chronic autoimmune disease. And I am grateful that, most days, they help me get out of bed. But Mr. Frey’s tragic death is a sobering reminder of the seriousness of these illnesses and their associated medications. It’s a reminder of the difficult choices we make, and risks we take, in our individual fights against autoimmune disease. And they underscore the reasons why we must keep searching for better answers.

Thank you for the music, Mr. Frey. Rest in peace.

Editor’s note: Please see a doctor before beginning or ending any medication.

Follow this journey on Rude Awakenings: Life With Rheumatoid Arthritis.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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A Peek Into the Mornings of a Chronically Ill Mom

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I believe parenting can be hard in all situations. Wanted to get that out of the way, first off. My kids are little angels sent straight from heaven, but they are also horrible monsters who daily chip away at my tiny bit of sanity.

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Stephanie’s “nest”

So, most mornings, we get up, have the eternal battle of whether or not my kids have to get out of bed (yes), get dressed by themselves (mostly no) and brush their teeth (most definitely yes), followed by the shoe and jacket debate/debacle. Sometimes I can actually do some of this stuff to help them, and sometimes they have to suck it up or sucker their dad into doing it.

Then, on days when I can drive, I fight the kids into the car (unless I can talk my husband into taking that fight) and drive the short drive to my eldest’s school. Then unpack, argue with the 2-year-old about why she can’t just stay at school, find whichever station of the classroom she’s hidden herself in so I’ll totally forget her (not happening), and pack back up in the car. Get home, eat the easiest thing that qualifies as breakfast (Clif Kid bars, cereal, yogurt or some combination thereof), then rest. For reference, that photo above is of my own personal nest.

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Emeline playing with Stephanie’s hair

Unfortunately, my little one, Emeline, does not need a rest after that small amount of physical exertion. Since I quit work last year, we’ve developed a few fun things to do on or near the couch, which basically includes coloring, reading books, doing learning exercises, dressing up and playing doctor or hair salon.

Because I am also living in constant brain fog (I’m not entirely sure if it should be attributed to parenting, rheumatoid arthritis, medications or all of the above), my kids also get away with some things in the meantime. This morning, it was lipstick. The picture isn’t super clear, but it is a shimmery pink shade all over her little lips.

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Stephanie’s daughter wearing lipstick

I am assuming my other daughter, Nora, looked similar this morning, but her teacher didn’t mention it and it was gone by the time I picked her up, so… I’m going to pretend she didn’t.

Then my husband Ben comes home and makes us lunch because he is an awesome cook and I am still recovering from drop-off.  Sometimes there is a little laundry or dishes or vacuuming in there, but mostly my day is just recovering and resting up for things.

Just a little morning in the life of a chronically ill mom.

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Stephanie resting at home

Follow this journey on Positively Rheumatoid.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines. 

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When You’re Forced to Compromise Your Health for Insurance

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I want to discuss a growing problem for many who live with chronic illness. This is a growing issue that poses a particular problem with those who require ongoing medical care, but it is affecting a large number of people.

I have rheumatoid arthritis. I was diagnosed in December 2014. I began treatment after my initial appointment with a rheumatologist in April 2015. Within this last year I have started therapy with multiple medications to help control the disease and slow the destruction of my joints. Unfortunately, the time required to wait for my initial rheumatologist appointment combined with the severity of my disease (which had already destroyed multiple joints) left me needing multiple surgeries. Disheartening still was realizing at the end of 2015 that I would no longer be able to afford my health care, with insurance.

I’m not the only one. In a recent thread on social media, a friend shared how upset she was about the $800 bill she received from one test during a recent trip to the children’s hospital with her daughter. This sparred a conversation with numerous other people who were experiencing the same thing. All those responding had insurance with high deductible plans. The families and their employers are paying premiums for plans that don’t pay anything until a deductible of several thousand dollars is met. This is sadly becoming the norm for families like mine that live on a limited budget and don’t have the money to meet the financial burden required to use the health care system.

I have disabled child and I have a chronic illness. Thankfully, our state offers assistance to children with medical disabilities that helps assure my son doesn’t go without the medication he needs. But the system isn’t perfect. Social security and insurance isn’t automatically provided to underage children with disabilities. Many times the only coverage is through private insurance. I can recall many of our own horror stories as well as those of other parents with children with special needs who have had to fight with insurance companies, only to run out of medication for our children. It isn’t right.

I spent the better part of December wondering how I was going to continue my medical care. We have since received generous help from friends who helped meet some of our financial needs, but we still don’t have enough money to pay for the doctor’s appointments and medication I require. Now we have to see if my doctors will work out payment plans, see me less often and reduce my medications to help me try to meet the financial demands of my illness and those of our family.

I guarantee many people are lying in bed with the same worry: How can I afford to pay for my care and still buy groceries or pay my mortgage? I know because I’ve talked with them. Parents are sick over the large bill they received because their child had an unexpected visit to the hospital, the caregiver to an aging parent is worried because they have to figure out how to pay their mom or dad’s mortgage while they spend time at a nursing home in rehab, or a parent of a child with severe epilepsy is crying because their insurance company is using every last tactic to stop shipment on the only medication keeping their child seizure-free. How is any of this OK?

Is anyone else ready to speak out about this? I hope so, because no one should ever have to compromise their health care. Sadly, this is happening every day.

Follow this journey on CrossRoadTrippers.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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When You Ask ‘Why Me?’ About Your Chronic Illness

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We’ve all asked the question at some point. Why me? Why did I get rheumatoid arthritis (RA), juvenile arthritis, migraine, Crohn’s, psoriasis, etc.? It is an existential howl of despair into the darkness, asking that most fundamental of questions. Why did this happen to me?

Closely on the heels of that question follows the expanded version: What did I do? What didn’t I do? Is this some sort of punishment? Because as hard as that is, it’s the only thing that makes a certain sense in this new reality where nothing makes sense.

Is it punishment?

When you are in extreme pain, when your chronic illness prevents you from doing what you need to do, when you feel like death warmed over — that has to be a punishment, doesn’t it? When something feels like torture — and the pain of many chronic illnesses often do — it has to be as a result of being guilty of something, being judged, sentenced, punished. Doesn’t it?

Only those who have done something very bad indeed are sentenced to a lifetime of misery. Is this the result of a vengeful god getting up on the wrong side of the bed or, for the less religious among us, maybe you didn’t exercise, quit smoking, eat right or any one of the many things we are supposed to do but so often don’t?

The domino effect is not over. Because once you start thinking that maybe this is a punishment, the self-loathing is inevitable. It may not be at the forefront of your consciousness, but it’s there. It’s so easy to say that you shouldn’t think that way, but how can you not? You did something bad for which you’re being punished with a chronic illness, ipso facto it’s your fault. You did this to yourself. So you proceed to beat yourself up for anything and everything. It becomes a habit, and you add your own punishment to the pile already dumped upon you.

But here’s an interesting question to add to the list: why not me?

That’s not to say you or I did something very bad for which we must be punished, but rather that this is the twin to the other, the why and why-not conjoined from conception. They are the yin and yang to one another, swirling together, expanding and contracting, always the two.

Why not me? What makes me so special that I deserve to be spared this pain, this illness? With the underlying add-on of “someone else does not.”

And this pokes right at that other thing I didn’t mention yet. The sense of unfairness that comes after the why. Because that’s the whole sentence, isn’t it — why did this happen to me? It’s not fair!

When I (metaphorically) stomped my foot and exclaimed that there was nothing fair about being a teenager with juvenile arthritis and in a wheelchair, my father would ask, “Whoever promised you life would be fair?” It never failed to bring me out of my mood, to joke back that I distinctly remembered a fairy godmother standing over my crib and doing just that. Promising me that life would be fair.

Truth be told, we all expect that to some extent, don’t we? Perhaps not consciously, but when something happens, something big and life-altering, something not-good, it feels unfair. We try to be good people, try to live in such a way that we leave the world better than we found it. Does that not deserve the reward of fairness?

Except, contrary to the way we feel it should be, no one actually promised us life would be fair. Which gets back to the question of why not you?

Finding peace

After coming up on five decades of living with RA, I’ve gone through the gamut. I’ve asked all the questions and never received an answer. The why me doesn’t do me any good, but neither does the why not me. It took years, but I finally figured it out. Found the reason that this disease chose me.

Sh*t happens.

I apologize for the choice of word, but there really is no other way to say it. Sometimes, it just happens. Other than the science behind it, which is not comforting at all, there is no reason. It is not a punishment for your sins or a consequence of not eating enough broccoli.

It just is.

And that is almost impossible to comprehend. So let’s not try. Let us just accept. Because in acceptance of its perfect now-ness, its purity, lies the answer. I believe that leaving the agonizing quest for a reason behind, and accepting that sometimes — say it with me — sh*t happens, gives you the freedom to move forward.

Follow this journey on The Seated View.

Lead photo source: Thinkstock Images

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Dear Juvenile Arthritis Mamas

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Dear Juvenile Arthritis Mamas,

Thank you for welcoming me into your community, but can be honest? I don’t always feel like I fit in there.  

I’ve had arthritis more of my life than not, but I have no idea how to be a mom and navigate this lonely journey. I’m thankful for your unbelievably, tireless efforts to figure this out. Your kids, and mine, are better for it. Your kids, and mine, make me a better warrior. They’re watching, and I feel a great responsibility to show them how to fight their disease.  

Growing up with arthritis, I know the ups and downs and what it’s like to be a kid with this, but I wasn’t prepared for my own child’s pain. None of us are.

A few weeks ago after our last rheumatologist appointment, my daughter Ava and I were having lunch, silently, taking it all in. When we finished, she asked me somberly, “Mom, when is this going to be over? I’m sick of living in pain. I’m so tired of fighting. When am I going to be normal?”

My heart fell to my belly. We hugged and cried during lunch hour in the middle of Subway. I couldn’t honestly tell her it was going to be all right, and I sat wondering the same thing for myself and my own disease. It was my largest JA mom fail to date, but I know it won’t be the last.  

At the very least, I take comfort in showing her I’m human. I have loads of hope and faith, and they get me through each day, but I just couldn’t look her in the eyes and pass it on in that moment.  

You would have though. You would have rocked that moment and restored her hope. It’s not a competition; neither one of us are going to come out of this without scars.

What I can offer is some advice on being a kid with arthritis.

Let them be a kid as best you can. I know it’s scary to send them in the world with suppressed immune systems and sick little bodies, but do it anyway. They don’t want to be “the kid with arthritis;” they just want to be like their friends. Let them talk about it on their own timelines. They need to feel comfortable in their skin; arthritis is their normal. I know as mamas we probably overshare because it consumes us, but their friends might be their escape. Let them have that.

Teach them to advocate for themselves. You’re not always going to be there, and the real world doesn’t care that they have arthritis. Our kids have to know how to fend for themselves to get what they need. People may not always understand their disability because our kids may not meet their predetermined expectation of what sick should look and act like. Make sure they know how to answer those questions and help them realize it’s not personal. It’s not about them.  

Teach them that strength is not defined by their ability to not show fear. I get frustrated, sad and angry about this disease all the time. I’m human. Some days I don’t feel like fighting, so I don’t, but that doesn’t make me any less strong. I will get another chance tomorrow. Teach them to embrace their limitations; there’s strength in admitting their vulnerabilities.

Most important, love them through it just like you’re doing. Sometimes it’s a real drag to be sick, tired and full of pain all the time. We act like jerks and we don’t mean it. Bad behavior needs to be addressed, of course, but after that, love on them more.  

Their arthritis will make them kinder, gentler more compassionate human beings — I promise. They’re better because you’re fighting along with them. You’re doing a good job. Keep going, mamas. Your work matters.

Love,

A JA Warrior and Brokenhearted Mama

(Please note, dear mamas, I have no judgment of you. There are always exceptions and every kid is different.  I offer my best advice with the best of intentions. It may not fit you and that is OK.  You’re doing the best you can and I get that. Keep doing you; I support you.)

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19 Truths People With Arthritis Wish Others Understood

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Rheumatoid arthritis (RA) is one of the most common forms of inflammatory arthritis,  where the body begins to attack the tissues of the joints instead of germs, viruses and other foreign substances, according to the Arthritis Society. This results in joint damage, pain, stiffness.

RA often has few outwardly visible symptoms, which can make living with the challenges that come with it difficult for people to understand. So The Mighty worked with the Arthritis Society to ask our readers who live with rheumatoid arthritis what they wish others could understand about the condition.

This is what they had to say:

1. “You live in the moment not knowing what the next hour will bring you.” — Jacqueline Scott

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2. “Having rheumatoid arthritis (RA) is like riding a roller coaster — you don’t know until you wake up in the morning if you’re going to have a up day or a down day. I used to plan everything until I got RA, now my day all depends on how I wake up feeling.” — Lori Hummel Basile

3. “Having rheumatoid arthritis is a lifelong commitment [to] knowledge about your body. You work in partnership with your family doctor, your rheumatologist and your pharmacist in having a control of your health. You have to be able to forgive yourself days that you do absolutely nothing and on good days you can accomplish many things… Never let your condition get you so down in the dumps that you gave a hard time to crawl out. Support, support and support is totally crucial.” — Violet Roberts

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4. “I push myself daily and pay for it dearly. Just because I can run around a dog show ring a few times, or ride my horse, or bike or swim for an hour, all with the aid of my meds and a strong will, doesn’t mean I won’t be hobbling around later for it. But you’d never hear me complain, and if I did, I would be a 10 out of 10 on the pain scale, though you still never would guess from this stoic face.” — Lauren Meadows

5. “I’ve watched friends and family drop out of my life because of it.” — Gracie Soligo-go

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6. “I’m so thankful for the days that I feel good and just mind myself when I feel bad but try to find something that makes me smile in it all.” — Jacinta Dowling

7. “Since being diagnosed, I don’t recognize myself.” — Lisa Parker

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8. “Although I’m in remission, I still get lots of pain in my ankle when I’m on my feet for too long. RA has gone away for a bit, but it’s still left me with a reminder that maybe one day it will be back. With every ache I feel now, I worry that it’s back.” — Andrew Banister

9. “It’s a living hell, but I keep going for my family.” — Carole Learmonth

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10. “Most people don’t understand how painful arthritis is. Because they don’t see an injury they think you’re exaggerating how much pain you’re in.” — Stephen Scott

11. “It’s not just a disease for old people. Kids get it too.” — Deb Hannah

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12. “I hate this disease and how much it’s taken from me. Few people seem to understand this and have little concept of how much we suffer.” — Lynda Clarke

13. “It’s not limited to one joint. Or just joints at all. It’s debilitating and excruciating pain. It’s not in my thumb. It’s in every inch of my existence all the way down to my soul.” — Tammy Leigh

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14. “I wish my family understood how painful and how hard it is do to just everyday tasks.” — Shelly Slack

15. “RA is not the same as your sore foot or your sore back because you overdid it. RA is a life change .” — Savannah Badry

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16. “The fatigue and foggy head are the hardest parts to deal with for me, yet no one knows they exist.” — Emily Burnie

17. “My disease doesn’t have me nor does it define me… But I do have my bad days where I feel drained, depressed and in pain. I’ve learned to make the best of my bad days and to keep going. I’ve learned that exercise helps and that I can do whatever I put my mind to. I try my very best not to let this disease stop me from doing what I want.” — Montana Fazi

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18. “It’s a lonely life to live.” — Jacqs Turner

19. “No matter what, I still live my life, and I don’t let it beat me because it would be easy to be miserable but I’d rather be happy.” — Amanda Thurow

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*Answers have been edited and shortened. 

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