19 Signs You're Not 'Just Stressed,' You Have an Autoimmune Disease
One of the challenging aspects of autoimmune diseases (a broad category that includes diseases in which the body’s immune system attacks its own cells, including rheumatoid arthritis, Crohn’s disease, lupus and multiple sclerosis, among others) is that at first glance, some of the early symptoms may appear stress-related. You might feel tired and feverish or experience pain in your joints or all over your body, and your symptoms may in fact get worse when you are stressed. But when your symptoms don’t go away when you’re not stressed, continue getting worse or you start to get symptoms people don’t typically get when they’re stressed, that’s when you and your doctors may start considering the possibility that you actually have an autoimmune disease (or another health condition — remember that many symptoms overlap!).
Many autoimmune disease don’t have an official diagnostic test, and symptoms may appear “invisible” — making it difficult to get a diagnosis. So we wanted to share our Mighty autoimmune disease community’s stories about the “signs” they experienced that showed they weren’t “just stressed,” but actually have an autoimmune disease. If these experiences sound familiar to you, check with your doctor, and remember you deserve care and compassion.
Here’s what our community told us:
- “I couldn’t keep up with my peers, or even my parents! I was doing grad school and working during the week then I would crash all weekend. I would just lie in bed. It would take that long for me to recover enough to start the week again on Monday. That’s when I knew that my version of ‘tired’ wasn’t the same ‘tired’ that others were experiencing. My tired couldn’t be quenched with sleep or rest. The relentless fatigue never ended. And still hasn’t. This was the symptom that really lead me to push doctors for more tests, etc. which eventually lead to a lupus diagnosis.” — Megan F.
- “I had severe joint pain, exhaustion, and would feel like I had just ran a marathon after walking from one room to another.” — Beth H.
- “Rashes that would break out all over my body even when I wasn’t stressed. Extreme fatigue even when everything in my life was going well. Widespread joint pain and horrible headaches that would keep me up at night and make it difficult to function during the day. It’s a long list, but I would experience them whether or not I was really stressed out. It took multiple doctors to find one willing to test me for things instead of just brushing it off as ‘oh you’re a college student so it must be stress.’” — Kathryn R.
- “I was short of breath in my 30s a lot. EKG was fine, blood pressure was fine. Lungs were fine. I said I knew it was not in my lungs, just ‘felt’ like I could not breathe — like I had too much adrenaline. I protested when I was prescribed a steroid ‘asthma‘ inhaler which never helped — so I stopped using it after three months. One hundred symptoms and 15 years later I was finally diagnosed with Hashimoto’s thyroiditis. Stress actually is my biggest trigger, but with hormone replacement I keep my healthy weight, don’t have breathing problems or dermatitis.” — Karen T.
- “The thing that finally sent me to my first rheumatologist was when my Raynaud’s started causing ulcers when I was 15. The Raynaud’s syndrome started when I was 13 but it was overlooked. I was diagnosed at 16.” — Brittany B.
- “Fatigue and the fact that I had a fever for three months straight.” — Haley H.
- “The list is endless, but the kicker for me, besides a low-grade fever for five months doctors blew off, were hives. Not just new, life-threatening ones to foods, but everything. Even the sun. I was told that ‘sometimes that just happens, and we don’t know why!?’ Then I was told to just ‘do your shopping and errands at night!’ Um, no, it doesn’t just happen. There is a reason, you just hadn’t figured it out yet. Until I found a fantastic rheumy!” — Tracy B.
- “My doctor thought me going completely deaf and losing all vestibular functions was just me having a stressful period. Turns out I have an autoimmune disease and will never hear/regain vestibular functions ever again. Guess ‘going home and taking it easy’ is no cure for Cogan’s syndrome.” — Juul T.
- “Bloody diarrhea multiple times a day, weight loss, fatigue. I saw my primary care doc within a month of the symptoms starting and several others over the course of a year, but wasn’t diagnosed with ulcerative colitis for another 18 months. Many thought it was stress related to my mother’s terminal illness, lactose intolerance, or lack of fiber in my diet.” — Olivia J.
- “The butterfly rash. I’ve had flushing in the past but the facial rash was constant. The doctor said it was rosacea and I knew they were wrong. Positive ANA later and here I am with lupus.” — June R.
- “I started progressively losing strength and feeling in my legs and before I got to the point of using a cane my PCP told me it was an emotional reaction to life stress. I have since been diagnosed with multiple sclerosis.” — Anna C.
- “An extreme, persistent burning sensation over my entire scalp. People thought I was saying that the scalp itched and was annoying. They thought it could be stress, or eczema or a vitamin deficiency — and they blamed me, claiming it must be my fault… Then my hair started falling out suddenly, dramatically in my hands daily in four large hairballs the size of a small cantaloupe and grapefruit size… After the more dramatic hair loss, my doctor checked my scalp and diagnosed: Alopecia areata.” — Catrice G.
- “I get skin ulcers and hives when I have flares and my joints swell so bad that I can’t bend my fingers. I have had to ask my 6-year-old to open a bottle of water for me or turn a doorknob to open a door for me. I can tell when a flare is going to be a bad one because my teeth or roots of my hair hurt! My level of ‘tired’ isn’t just my ‘usual’ lack of energy… it’s a level that is so intense that just getting up to go to the bathroom is a burden, showering sometimes doesn’t happen for a couple days because I don’t have the strength to lift/move my arms to wash my hair and body.” — Melinda M.
- “When my body ached so much from stress, I couldn’t even get out of bed.” — Aubrey H.
- “Pain every time I ate, diarrhea, weight loss and gain. My pediatrician said I was stressed and to take Pepto Bismol, even as it got worse and worse. Eventually I just assumed that everyone was in excruciating pain every time they ate. It started when I was 12, I didn’t get diagnosed with Crohn’s disease until I was 18, and didn’t get proper treatment for that until I was 22.” — Kodi M.
- “I remember very clearly the first time I knew there was something wrong with me. My dad and I were washing windows (family business) at a beautiful lake cottage. I wasn’t feeling well that morning but I knew we had a busy day so I had to suck it up. About two hours into the day, my dad came out looking disappointed. He said this house typically took two to three hours with two people and we were barely half done. I needed to work harder and be more efficient. So I busted my butt trying to make my dad proud… That evening and the next day, my body retaliated. And that’s when I knew I wasn’t lazy or my symptoms weren’t entirely from stress. A few years later I was diagnosed with lupus and fibromyalgia.” — Amber B.
- “When I could no longer carry groceries up the stairs a few years back. I thought I was just really tired. Now I can barely make it up our stairs at all. We are moving downstairs because of it.” — Angela K.
- “I work in a school so I am unemployed during the summer. Less stress, less to do, but still all of the same problems and symptoms.” — Joanne S.
- “Hands and feet going numb and turning blue. I was told by three doctors I was just stressed. Ten years later, I finally had a doc diagnose me with Raynaud’s and lupus.” — Charla J.