Living with an autoimmune disease is one of the most misunderstood experiences someone can go through. From the outside, you may look perfectly healthy—your hair is done, your makeup is on, you’re smiling, and people often tell you, “You look fine.” But inside, it feels like your body is waging war against itself.

I know this firsthand. Six years ago, at the age of 60, I was diagnosed with rheumatoid arthritis (RA), an autoimmune disease that attacks the joints and causes inflammation, pain, and progressive damage. Since then, I’ve been on a journey filled with ups, downs, discoveries, and lessons I hope can comfort or guide others who are also walking this difficult path.

The Struggle Behind the Smile

The hardest part of living with an invisible illness is how others perceive you. I can’t count the number of times I’ve been told, “But you look great!” when, in reality, I felt like I had been hit by a bus.

What people don’t see is the flare-ups—when every single joint in your body aches, from your fingers and wrists to your hips and feet. They don’t see the mornings when just getting out of bed feels impossible, or the days when you can barely lift your arm to brush your teeth.

This disconnect creates frustration and isolation. People want you to “suck it up” or “stop thinking about it,” but that’s simply not how autoimmune diseases work.

Why I Never “Claim” the Disease

One thing I’ve chosen on my journey is not to claim RA as part of my identity. Instead, I say, “I was diagnosed with rheumatoid arthritis.”

The Bible tells us that words have power, and I firmly believe that what we speak shapes our mindset. If I go around repeating, “I have RA, I have RA,” then my mind will accept that as truth and give up the fight. So every day, I choose to declare:

• My body is well.

• God has healed me.

• I am not defined by this disease.

Even on my worst days, this practice keeps me from surrendering mentally.

Steroid Shots: Small Relief, Big Discoveries

My treatment has included steroid shots, which I receive every 90 days. Typically, they’re injected in the hip or buttocks, reducing inflammation for a few weeks. But one day, I asked my doctor to inject the shot directly into my shoulder—the joint that hurt the most.

That decision changed everything. For six glorious weeks, I felt better than I had in years. While it didn’t cure me, it reminded me how powerful targeted relief can be and gave me hope that experimenting with treatment options matters.

The Daily Battle of Flare-Ups

Autoimmune diseases, like RA, happen because the body mistakes its own tissues as threats. Instead of attacking viruses or bacteria, your immune system turns inward, targeting your joints and muscles.

For me, a flare-up feels like my body is on fire—every joint screaming in pain, my muscles heavy, and even the simplest tasks becoming impossible. Some days, the only option is what I call a “movie day”—staying in bed, giving myself permission to rest, and letting my body recover.

Food, Supplements, and Small Choices

Managing RA isn’t only about medication. I’ve learned that food can either be my medicine or my enemy.

Foods That Help Me:

• Salmon and lean proteins (chicken, tuna, shrimp, buffalo)

• Anti-inflammatory fruits like berries, grapes, apples, and pineapple

• Vegetables like broccoli, spinach, sweet potatoes, and carrots

• Healthy oils like olive oil, walnut oil, and coconut oil

• Coconut water, beet juice, and cherry juice

Foods That Hurt Me:

• Fried foods

• Excessive sugar

• Too many carbs and dairy

Do I stick to this list perfectly every day? No. Sometimes I crave fries and soda just like anyone else. But I’ve learned that when I fuel my body well, my symptoms are more manageable.

Medications and Tough Choices

Over the years, my doctors have recommended different medications, from sulfasalazine to stronger options like methotrexate, a drug that includes low-dose chemotherapy.

For me, methotrexate feels like the last line of defense—and I’ve chosen not to take it yet. Mentally, I know that if I start injecting chemo every week, I might feel like I’ve lost the battle. Instead, I work with my doctor on alternatives while balancing supplements, lifestyle changes, and occasional pain management options like hydrocodone or, in extreme cases, Xanax.

Facing Judgment and Misunderstanding

One of the hardest battles isn’t the disease—it’s dealing with people who don’t understand. Even close family members have said:

• “You look fine.”

• “Why don’t you just stop thinking about it?”

• “Can’t you just take a Tylenol?”

Those words cut deep. Because unless you’ve lived with chronic pain, you can’t imagine the toll it takes—physically, emotionally, and mentally.

Alternative Relief: My CBD Experience

Alongside medication and food choices, I’ve experimented with CBD creams. Living in Colorado gives me access to CBD products with small amounts of THC, which I find helpful. I rub the cream directly onto painful joints, and while it doesn’t cure me, it provides localized relief without the high of smoking.

It’s just another tool in my toolbox—something that helps me get through the days when nothing else seems to work.

Living with Hope

At 66, I’ve had to accept that autoimmune disease is part of my journey. But I refuse to let it define me. Every day, I declare healing over my body, I make choices that support my health, and I remind myself that invisible illness doesn’t mean invisible strength.

If you’re living with RA, lupus, fibromyalgia, or any autoimmune disease, please know: I see you. I understand you. You are not alone.

Together, even through the pain, we can find ways to keep moving forward, one day at a time.

Daily Struggles with Joint Pain

For years, rheumatoid arthritis (RA) has shaped my daily life. The pain in my wrists and fingers can get so severe that even holding my phone feels impossible. On the hardest days, I find myself rubbing my hands constantly—sometimes up to ten times a day—using CBD cream. The relief isn’t permanent, but in those moments, it feels like I can push my joints back to where they used to be.

Doctors tell me it might not really “fix” anything, but if it helps me mentally, then it’s worth it. And honestly, it does. The CBD with THC works better for me than plain CBD—it eases the pain just enough to function.

Why Marijuana Didn’t Work for Me

I did experiment with marijuana, since many people claim it helps with pain. But for me, it was a nightmare. Even small doses left me paranoid, anxious, and overly sensitive to every sound—like the silence was too loud. Instead of relief, it created more stress. After two attempts, I knew it wasn’t an option.

Medical marijuana pills were another suggestion, but again, I wasn’t interested. Back in high school, I never liked beer or weed, and that hasn’t changed. I’d honestly rather live with the pain than endure eight hours of paranoia.

CBD, on the other hand, remains a lifesaver. It doesn’t take everything away, but it makes daily life more manageable.

Stress, Gut Health, and Autoimmune Triggers

Through my research and discussions with doctors, I’ve learned that many autoimmune diseases—including RA—are often linked to gut health and prolonged stress. For me, the stress trigger came during the years I cared for my sister, who battled cancer for five years. Watching her decline, supporting my parents, and stepping in for her children took an emotional toll.

After years of carrying that weight, the pain started creeping in—first occasionally, then more often, until I knew something was seriously wrong.

The Diagnosis That Changed Everything

At first, I didn’t know which doctor to see, so I Googled and found an internal medicine doctor, Dr. Anwar, in Iowa. After months of bloodwork, joint fluid tests, and monitoring, he confirmed the diagnosis: rheumatoid arthritis.

Oddly, the diagnosis brought relief. Finally, I knew what was wrong. But the reality of RA quickly set in when I saw images of people whose bodies were twisted and deformed by the disease.

Steroids were the first treatment. They worked wonders for my joint pain, but the side effects were brutal—weight gain, round “moon face,” heart palpitations, and insomnia. They weren’t sustainable.

When COVID hit and prescriptions became difficult, I found the Hirsch Center in Florida. My doctor there saved my life. He confirmed the RA diagnosis, got me on better medication, and most importantly, discovered something else that was silently poisoning me: parathyroid disease.

Discovering Parathyroid Disease

For years, my calcium levels were “a little high,” but my doctor dismissed it as something to keep an eye on. What I didn’t know was that one of my four tiny parathyroid glands had gone bad, dumping dangerous amounts of calcium into my blood.

This condition is known for the symptoms:

• Stones – kidney stones
  

• Bones – brittle bones
  

• Emotional overtones – mood and cognitive issues
  

For me, it presented as dementia-like symptoms. I couldn’t remember where I was, why I was somewhere, or even what city I lived in. At times, I’d ask my husband repeatedly, “Where are we right now?” It was terrifying.

After an MRI and further tests, the bad gland was found and surgically removed. The surgeon compared it to striking gold when the malfunctioning gland lit up during surgery.

The recovery was miraculous. A few days post-surgery, I felt a warm wave of healing rush through my body. My memory returned, my mind cleared, and I felt like myself again.

The Role of Supplements in Managing Autoimmune Disease

Even with medication, supplements play a huge role in how I manage RA and overall health. With my doctors’ approval, I’ve built a daily routine that includes:

• Perfect Aminos (Body Health, recommended by Gary Brekka): Supports gut health and addresses leaky gut issues that can worsen autoimmune conditions.

• Vitamin D2 & Vitamin C (Nordic brand, gummies): Taken in double doses for immune and bone health.

• Vitamin K & K2: For bone and cardiovascular support.

• Magnesium (triple magnesium, gummies): Helps with muscle relaxation and sleep. I take six at night instead of the usual two.

• B12, B6, and folic acid (Superior Source): Small dissolvable tablets for energy and nerve support.

• Omega-3 with D3 (Nordic): For joint health, heart, brain, and immunity.

Managing supplements sometimes feels like a full-time job, but they truly make a difference.

Learning to Live with RA

Living with rheumatoid arthritis is a constant balancing act. Between CBD for immediate relief, prescribed medications for long-term management, and supplements to support my body, every day is a fight for quality of life.

The truth is, having an autoimmune disease often means navigating trial and error—figuring out what works for your body and what doesn’t. For me, marijuana wasn’t the answer, but CBD, the right doctors, targeted medication, and a strong supplement routine have all helped me reclaim my life.

And while the journey hasn’t been easy, the combination of medical care, self-advocacy, and persistence has given me something I thought I’d lost during the darkest times: hope.

Living with an autoimmune condition like rheumatoid arthritis (RA) is an ongoing battle that most people never see. On the outside, you may “look fine,” but inside, your body is waging war against itself. I’ve been navigating life with RA for six years, and the journey has been filled with unexpected challenges, treatments, flare-ups, and countless moments where I’ve had to advocate for myself.

This is my story—the highs, the lows, and the daily reality of living with an invisible illness.

Exploring New Treatments: From Methylene Blue to DNA Testing

Recently, I started trying something new: methylene blue. I first heard about it from Dr. Gary Brekka. It’s designed to oxygenate your water and help with gut health. I add five to ten drops into a bottle of water, shake it, and drink it carefully (it stains everything!). It’s too early to tell the long-term effects, but I’m hopeful.

I also took Dr. Brekka’s DNA test that evaluates five key genetic points. My results came back with:

• Two reds (both related to gut health deficiencies)

• Two yellows (connected to gut and organ health)

• One green (mental resilience and cognition)

It was eye-opening to realize how much my gut health plays into my overall autoimmune struggles.

Oxygen Boosts and Steroid Struggles

Living at altitude in Colorado, I rely on portable oxygen canisters for an extra energy boost. My favorite is peppermint-flavored—it instantly wakes me up and helps when I’m feeling short of breath.

But then there’s my least favorite tool: steroids. During severe flare-ups, I sometimes have to take a steroid pack that tapers from six pills down to one over several days. While it helps reduce inflammation, the side effects are brutal: racing heart, sleepless nights, heightened anxiety, and insatiable hunger. It feels like a nightmare, but sometimes it’s the only option when pain won’t subside.

Finding Comfort: The Power of Heat

If there’s one thing that consistently brings me relief, it’s my heated blanket. I travel with it everywhere. At night, I wrap my hands like a mummy, slather on CBD cream, and let the warmth soothe my joints. Honestly, this small comfort does more for my body than almost anything else.

New Complications: Migraines, Vision Loss, and More

RA doesn’t just affect joints—it can attack organs too. Over the years, I’ve dealt with:

• UTIs (something I never experienced before RA)

• Blinding migraines lasting for days or even weeks

• Eye complications, including cataracts from steroid use and a permanent dry spot in one eye caused by RA attacking my vision

My eye doctor prescribed artificial tears and recommended sleeping with an eye mask to protect my eyes at night. These small adjustments have made a world of difference, but the long-term damage is sobering.

The Invisible Struggle: Why People Don’t Understand

One of the hardest parts of RA is the lack of understanding from others. When I cancel plans because of a flare-up, people often assume I’m being dramatic or lazy. But if I say I have a migraine, suddenly everyone sympathizes:

• “Take care of yourself.”

• “Rest until you’re better.”

• “We’ll reschedule when you’re ready.”

It’s frustrating that people show compassion for migraines or broken bones, but not for autoimmune flare-ups. That’s why I sometimes tell people I have a migraine, even when it’s really RA. It’s the only way to get the support and understanding I need.

Public Speaking Challenges

As a speaker and podcaster, RA has changed the way I approach events. Travel days alone can feel like being “hit by a bus.” I often need an extra day just to recover before I can get on stage.

Handshakes used to bring me to tears because of the pain in my fingers. Now I use compression gloves or simply offer a friendly fist bump instead. It may seem small, but protecting my hands is essential for surviving these events.

Daily Life with RA

On the worst days, even basic tasks feel impossible:

• Taking a shower

• Brushing my hair

• Cooking a simple meal

• Talking on the phone

There are days I don’t leave bed, staying wrapped in blankets, sleep mask on, just trying to endure the pain and fatigue. People don’t see this side—they only see me smiling on stage or online.

Lessons in Compassion

If you don’t live with an autoimmune disease, but you know someone who does, here are a few things to remember:

1. Stop saying “suck it up.” It’s not helpful—it’s cruel.

2. Don’t assume we’re fine just because we look okay.

3. Show compassion without judgment. If someone cancels, trust that it’s for a reason.

When I used a walker after hip surgery, strangers rushed to open doors for me. With RA, I don’t get that same compassion because the illness is invisible.

Faith, Family, and Perspective

My faith has been my anchor. Reading the book of Job reminds me that suffering doesn’t mean hopelessness. Like Job, I try to keep praising God, even when I feel broken.

My husband, Bill, understands more now than ever. He went through his own battle with myelofibrosis, a rare blood cancer that required a full bone marrow transplant. Watching him struggle through chemo and recovery gave us both a deeper empathy for invisible pain. He is alive today because of a donor from BeTheMatch.org—and for that, we’re forever grateful.

Living with an Invisible Disease: Finding Strength, Understanding, and Acceptance

When people think of illness, they often picture something visible—hair loss, medical equipment, or a frail appearance. But for those of us with autoimmune diseases like rheumatoid arthritis (RA), the pain and exhaustion remain largely hidden. This makes understanding, empathy, and support even harder to come by.

In my journey, I’ve learned that invisible diseases come with not only physical pain but also emotional battles. Let me share how my husband’s health challenges, my own struggles with RA, and lessons from a Mayo Clinic program have shaped how I approach life today.

How My Husband’s Illness Changed Everything

During a difficult season of our lives, my husband went through his own major health crisis. He had no energy, lived on high doses of steroids and medications, and some days couldn’t even walk to the bathroom without help. Watching him so depleted, I thought, That’s exactly how I feel.

Thankfully, he made a full recovery after a bone marrow transplant from a young female donor—whom we affectionately call “Doris the Donor.” With her DNA, he’s healthier than ever and back to his full, vibrant self.

That experience transformed our relationship. For the first time, he truly understood what I go through: the steroids, the fatigue, the days when every movement feels impossible. Now, when I say I’m in a flare-up, he gets it. That understanding alone has brought us closer together.

The Struggle for Compassion

The hardest part about an invisible disease is that people don’t see it. My husband looked visibly ill, so friends, neighbors, and even strangers offered prayers and compassion. Meanwhile, when I said I was in a flare-up, people would shrug: “But you look fine.”

Even my parents and some of my kids struggled to understand why I was always lying down. I started sending them articles and resources, hoping they’d take the time to learn. Some did. Others didn’t. It hurts when your loved ones minimize what you’re going through simply because they can’t see it.

If someone in your family has an autoimmune disease, please—show them mercy. We are tired of being treated like we’re lazy or making excuses. The truth is, we want to do all the things you want us to do, but often our bodies won’t let us.

Giving Myself Permission

For years, I resisted slowing down. I told myself: “I was a full-time rehabber for 20 years. I can’t just lie around. I should be moving. I should be working.”

It took me four years to give myself permission to rest. Now I remind myself, and anyone else walking this path—that it’s okay to have “movie days.” Whether it’s a day, a week, or even a month, you are not a failure if you need to rest. You are simply doing what your body requires.

One of the hardest mental battles I’ve faced is accepting that reality. Some days even blankets feel too heavy against my skin. Some days I can’t lift my arms to wash my hair. On days like that, I’ve learned to stop apologizing and stop explaining.

The Mental Game of Autoimmune Disease

Living with RA is not just physical—it’s mental and emotional. I’ve trained myself to say, “I was diagnosed with RA,” instead of “I have RA.” Words matter. Your body believes what your mind tells it.

On bad days, I repeat to myself: “I’m not in pain. I’m not in pain.” Does it always work? No. But shifting focus sometimes eases the intensity. And yes, there are times I’ve reached for a glass of wine at 11 a.m. just to feel a little relief, even though sugar is on my “don’t-have” list. Because some days, you just do what you can.

Why Family Support Matters So Much

Autoimmune disease is exhausting, not just because of the pain, but because of the constant pressure to “suck it up” for other people. Family events, birthdays, social gatherings—they all require energy I often don’t have.

At my grandson’s birthday, I was in terrible pain. But I showed up, stayed an hour, hugged everyone, and then Bill brought me home. That’s the reality of living with RA: you make compromises, you show up when you can, and sometimes you leave early.

What hurts the most is when family members dismiss us as lazy or accuse us of exaggerating. We don’t fake being sick. We’d give anything to live without this.

Life Becomes a Full-Time Job

Managing autoimmune disease feels like working a demanding job you never applied for. I spend two hours every morning just trying to get my body moving. My podcasts are scheduled only in the afternoons now, because before noon, I’m still recovering from the night.

Even then, if I push too hard—several days in a row—I pay the price with flare-ups that leave me bedridden. This balancing act of two “good days” followed by a “movie day” is how I manage life now.

A Powerful Exercise from the Mayo Clinic

One of the most transformative tools I’ve found comes from a program my mom attended at the Mayo Clinic. They taught a three-column exercise that I now use myself:

• Column A: The old you—everything you used to do with ease (traveling, working, exercising).
• Column C: The worst you—everything you can’t do on your hardest days.
  

• Column B: The real you today—a blend of what’s still possible from Column A and a more hopeful version of Column C.
  

Column B becomes the balanced middle ground—the best of who you can realistically be now. It’s about acceptance. It’s about redefining life, not in terms of what you’ve lost, but in terms of what you can still do.

Working through those lists is emotional—I cry every time—but it’s helping me build a healthier mindset.

Finding Small Joys

Even small things make a difference in how I feel. My pink hair gives me a boost of vibrancy when my body feels anything but vibrant. Sometimes I skip shaving my legs for a month because I simply don’t care. And I’ve stopped getting my nails done because the chemicals burn my nail beds.

It may seem trivial, but these little choices are ways of reclaiming control, of saying: “I may not be the old me, but I can still create joy in small ways.”f

Acceptance, Hope, and Living in Column B

At 66, I don’t want RA to define me, but I can’t deny that it’s now part of my daily life. I’ve had to accept that the old me is gone—but that doesn’t mean life is over. Column B represents the best version of me today.

Do I want to go back to the way I used to be? Of course. But the truth is, this is who I am now. And if you or someone you love is struggling with an invisible disease, I encourage you to try the column exercise. It may help you accept, adjust, and even find peace

Final Thoughts

Autoimmune disease is relentless. There’s no cure, no real break, and no visible sign to prove how much we’re hurting. That makes compassion, patience, and understanding more important than ever.

So if you love someone with an autoimmune disease, please—give them a break. Let them rest. Stop telling them they “look fine.” Show them grace.

And if you’re the one walking this road, remember: you are not your disease. You are not lazy. You are not weak. You are Column B—the best you can be today.

Together, let’s claim that, and let’s keep moving forward.