Last month was officially Autoimmune Awareness Month, but I don’t want the conversation to end with the flip of a calendar page. We need to keep discussing the topic and open the door for those with AND without autoimmune disease. Because this is our health and we want others to understand. It’s not just about understanding how we feel as fight against our own bodies and navigate the sometimes endless days of symptoms. We need others to join us and come along beside us as we work to build better communication and stronger communities across the board — online and in our real, everyday lives.
Are you ready? Are you willing to listen and hear our stories or those of your friends and family? We need you…today and tomorrow.
Join the community. Encourage anyone you know in the middle of a fight to feel well. Offer lots of grace and loving words. This means more than you realize.
And share this post to continue spreading the awareness. It is much appreciated, friends.
Stay strong. Keep fighting. You are not alone in your own battle.
A fellow fighter,
As March ended, I posted a question on social media and shared it in several Facebook groups. Please take the time to read these stories and quotes that everyone submitted. And thank you for being a part of this community.
For those with autoimmune disease, what’s 1 thing you would tell others or want them to know?
“Some days your body just hurts and there’s nothing you can do about it…it takes so much longer to get over things like the flu or even colds/coughs. They just have no mercy on our bodies and immune systems.”
–Kristen Clements, @KristenClem
“I have a boat load of autoimmune disorders…systemic lupus, fibromyalgia, Rynauds, Hashimoto’s, arthritis, migraines and a sensitivity to gluten. What I want people to know is this:
1) every day I make a choice that I can go to work, teach special needs students at church, take care of my family in spite of how I feel or how bad I’m in pain. Either way I don’t feel good so I choose to do things that help distract me from how I feel.
2) not all health challenges are visible or deforming
3) pain can be exhausting
4) education and taking positive steps to manage your condition is empowering and helps you to better communicate with your doctors
5) I suffered with horrible headaches for over 30 years and the docs only wanted to push narcotics so I struggled and suffered thru them. Finally I went to a neurologist who specialized in headaches to find out they’re migraines that are being managed from a preventable stand point. Don’t suffer!!! Find a doc that will really listen to you.”
“I have Celiac, Rheumatoid Arthritis, Sjogren’s and Fibromyalgia and I wish people knew the following: 1) If I eat gluten, even a tiny bit, I don’t throw up or have diarrhea (sorry!) instead I have severe joint pain, the feeling of someone standing on my chest, and sleep for long periods of time. So I don’t “cheat” because I’m out a week of my life. 2) I hurt. You can’t see it and perhaps you can’t tell by my happy nature, but I hurt. every single day. So if I say “My thumbs hurt” or something like that, it means they are hurting badly. 3) You might have arthritis in your knee or elsewhere, but that’s different than RA. 4) The exhaustion from RA and Fibromyalgia is almost indescribable. It’s all the way to the core of your body exhausted.”
–Deb Finnegan, check out her blog
“Being diagnosed with Celiac disease is not a curse but a blessing. I eat healthier now and I have found a community who understands what that means…rather than bemoan what I can’t eat, I celebrate all of the new things that I have found and like! Cauli-mash is just one example.”
–Kassie Layne, @kassinva
“Instead of feeling betrayed by their bodies, I would like those with AI conditions to befriend their bodies. Lifestyle, mindset, and dietary changes can have a huge impact on health, regardless of what mainstream medical doctors might say.”
–Meredith Chamorro, from She Swings on a Star, @meredithhutterc, check out her blog
“Stay positive and don’t stop trying to find a way to feel better.”
“Hashimoto’s is autoimmune and affects many functions of the body. We need to be our own advocates. If you don’t find relief from your symptoms, keep moving forward – even if it means switching doctors a few times. I just found out yesterday the I have a 90% chance of having thyroid cancer. I knew something was wrong, but labs were always ‘in range’. ‘In range’ means nothing when you have Hashimoto’s and still feel rotten. We know our own bodies! ”
“I wish they knew I have a disease. Sometimes I don’t feel well even though I may not say anything. Sometimes life is a struggle. That it is so difficult for me to lose weight that I don’t want any one to know that I am trying because I don’t have the same results as healthy people.”
“It took decades for me to have a diagnosis of Hashimoto’s and hypothyroidism. Keep searching for answers and don’t give up. I was diagnosed because I went to a specialist (an endocrinologist) because my primary care doctor saw nothing abnormal with my lab work (I was .1 away from being considered hypothyroid according to some standards but was within the range of hypothyroidism by other standards and had many symptoms. The endocrinologist tested my thyroid antibodies and they were through the roof. He confirmed I was hypothyroid and had Hashimoto’s. It has been years since my diagnosis and I am feeling so much better. There are still days when I don’t feel well but they are few and far between.”
–Kim Zajan, check out her blog
“I do hurt. I feel sick most days. My definition of a successful day has changed since becoming ill with Lupus. I do smile. A lot. But I’m still sick and hurting. I know most days I “look” normal. I “act” normal. I’m often in good spirits. But I’m still sick and suffer from a potentially life-threatening disease. I push through a lot. I have to. I need to live life. But my days are different now. My work and work schedule are different now. And that’s OK. I’m doing the most I can with what I have. The next time you ask me how I am, I will probably say “ok” or “fine”. My mind and soul are ok and fine. But my body is sick. My bones hurt. There’s a literal, raging battle going on inside at all times. That’s what happens with an autoimmune disease. And the consequences of the raging battle are pain and unbearable fatigue. So, next time you see me ask me how I really am. It only takes a second. But if you’ll listen I will tell you exactly how I am doing. Your heartfelt listening, compassion, and concern may just be all the medicine I need for that day.”
–Alison Potter, check out her blog
“Sometimes even when we who have type 1 diabetes do all the “right” things, our bodies go wackadoo and do wackadoo things. (Especially in the cases of those of us who are female!) We need patience and (an attempt at) understanding from people, not judgment or suggestions that come from a place of being uninformed (or possibly worse: ill-informed) about T1.
Managing diabetes sometimes feels like another full-time job. (Even more, because it’s 24/7.) Anything you can do to ease the burden or help carry it — as long as you ask first — is likely to be appreciated.”
“It took 7 years to get a lyme disease diagnosis. People don’t have much compassion when your illness seems invisible. I’d want people to know that it’s not “all in your head”, don’t give up looking for answers when something feels wrong, and know it can get better!”
–Amber O’Toole, @amberotoole, check out her blog
“I was diagnosed with Hashi’s last fall and inflammatory Polyarthritis (most likely RA) in February. I am too young to be in this much pain. The best advice I can give anyone is that you are not promised a tomorrow so don’t wait to do things 20 years from now.”