Autoimmune Disease

Join the Conversation on
Autoimmune Disease
12.2K people
0 stories
1.6K posts
Explore Our Newsletters
What's New in Autoimmune Disease


Hey y’all-

It’s been a while since I’ve posted but have had some health stuff come up recently and need some guidance, would appreciate any insight. I live with POTS, EDS, Hashimoto Thyroiditis and that’s accompanied by gastroparesis (delayed gastric emptying). A few years back my mom was diagnosed with MCAS as she would have attacks that involved diarrhea, vomiting, hives, flushed, red splotches, etc.. I’ve briefly talked with my cardiologist about the possibility of MCAS, but never landed on a definitive diagnosis. Fast forward to the past two weeks where I’ve had similar experiences: diarrhea (multiple rounds per episode), hives, fluttering HR, feeling faint, red splotches, etc. so we’re thinking I may also have MCAS (as my mom has it and it can go along with POTS/EDS). Wondering what people with MCAS experience can speak to, do these episodes sound like MCAS? How did you receive your diagnosis? What is your treatment? How do you stop/avoid episodes? Thanks! #MCAS #MastCellActivationDisorder #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #AutoimmuneDisease

1 reaction 1 comment
See full photo

Motivational Monday: It’s Okay to Feel Burned Out

“It’s okay to feel burned out from dealing with your health. It’s exhausting and there are no breaks”- Anonymous

I’m leaving in an hour to go on a mini-vacay with my family.

My clothes are packed. It's time to make sure I have enough diabetes medicine to cover the next couple of days as well as a spare in case of an emergency that prevents me from returning home in time.

To keep track of my blood sugar levels, I need spare CGM and meter supplies.

My blood sugar levels are affected by dehydration, so I have to keep multiple bottles of water on hand. During the whole time, the temperature will be in the 90's, and I absolutely refuse to spend $2-3 on a single bottle of water.

Lastly, there's the food situation. What are some foods I can eat that won't trigger my CGM alarm? Do I have enough snacks during long traffic jams?

Just the mental preparation of traveling with diabetes sometimes burn me out. But, it’s okay.

The important thing is that I'm making memories with my family, and although the extra preparation can be annoying, it's all worth it in the end.

I want to encourage you that it is okay to feel burned out. Feeling this way when we have to take extra care of our health conditions and still live our lives is a natural reaction.

There are no days off from managing diabetes; however, there are tools that we can use that can help us stay encouraged and motivated on this health journey:

- Changing up your diabetes plan
- Focus on activities and hobbies to temporarily take your minds off the stress
- Reach out to your healthcare team for mental health resources
- Reach out to a diabetes support group (like this community)

We are here to support you no matter where you are on this diabetes journey 💙

#Diabetes #DiabetesType1 #DiabetesType2 #Diabetestype3 #lada #mody #prediabetes #GestationalDiabetes #JuvenileDiabetesType1 #ChronicIllness #AutoimmuneDisease #Lifestyle #MentalHealth #EmotionalHealth #Health #Support #SupportGroups #MightyTogether

26 reactions 7 comments
See full photo

Quick Tip Thursday: An Accountability Partner Can Help You Manage Diabetes

Having an accountability partner can help you manage diabetes. An accountability partner keeps you on track with your diabetes management goals by providing support, encouragement, and motivation.

If you do not currently have an accountability partner, consider reaching out to a friend, family member, or healthcare professional who can fulfill this role. You can even use this community for accountability!

Having this support system in place can greatly enhance your ability to successfully manage diabetes and improve your overall quality of life.

#Diabetes #DiabetesType1 #DiabetesType2 #Diabetestype3 #lada #mody #prediabetes #GestationalDiabetes #JuvenileDiabetesType1 #ChronicIllness #AutoimmuneDisease #Lifestyle #accountability #Tips #Support #SupportGroups #Health #MightyTogether

4 reactions
See full photo

Talk About It Tuesday: Community Check-In

Time for a community check-in 💙

How are you really feeling and how can our community support you during this time?

Share how you’re feeling with an emoji or your thoughts in the comments below.

#Diabetes #DiabetesType1 #DiabetesType2 #Diabetestype3 #lada #mody #prediabetes #GestationalDiabetes #JuvenileDiabetesType1 #ChronicIllness #AutoimmuneDisease #Lifestyle #MentalHealth #EmotionalHealth #CheckInWithMe #Support #SupportGroups #MightyTogether

3 reactions 5 comments
See full photo

Motivational Monday: It’s Okay to Feel How You Feel

“It’s okay to grieve. Your life may look a little different now that you have a diagnosis, but that’s okay. A different life doesn’t mean a bad life. However, at the same time, it’s totally okay to be sad and grieve. A chronic illness is a major thing. Honor your feelings. Don’t dismiss them.”- The Spoonie Diaries by @Katieemayl

Let yourself feel how you feel, then let those feelings motivate you to manage diabetes so that you can live the best life possible 💙

#Diabetes #DiabetesType1 #DiabetesType2 #Diabetestype3 #lada #mody #prediabetes #GestationalDiabetes #JuvenileDiabetesType1 #ChronicIllness #AutoimmuneDisease #MentalHealth #Lifestyle #Health #encouragement #IfYouFeelHopeless #Support #SupportGroups #MightyTogether

14 reactions 5 comments
See full photo

Wellness Wednesday: Questions to Ask Your Doctor

Asking questions during a doctor's appointment is crucial for maintaining good health.

It helps understand your health and medical conditions, provides information on medical terminology, and makes informed decisions. It also makes you feel more comfortable and confident in your healthcare journey.

Asking questions also helps provide personalized care by tailoring recommendations and treatment plans to meet individual needs. Additionally, asking questions helps avoid misunderstandings and miscommunications by ensuring you fully understand your doctor's instructions.

Here’s a great resource about exercising your right to ask questions and the type of questions you should ask your doctor:

“Exercising Your RIGHT to Ask Questions”

#DiabetesType1 #DiabetesType2 #Diabetestype3 #lada #mody #prediabetes #GestationalDiabetes #JuvenileDiabetesType1 #HealthCare #HealthcareProviders #Advocacy #ChronicIllness #AutoimmuneDisease #Support #SupportGroups #MightyTogether

Questions to Ask About Type 2 Diabetes Health Care

What to ask, to who, and when!
2 reactions
See full photo

Motivational Monday: Move Forward

“One thing that you really have to do is move forward. You’ve gotta really tackle this. You can’t be a passive patient.” Dr. Phil McGraw

I want to encourage you today to keep moving forward! Take control of your health and do whatever it takes to manage diabetes. Advocating for yourself is crucial because if you don't speak up for yourself, who will?

#Diabetes #DiabetesType1 #DiabetesType2 #Diabetestype3 #lada #mody #prediabetes #GestationalDiabetes #JuvenileDiabetesType1 #ChronicIllness #AutoimmuneDisease #Lifestyle #Health #Advocacy #Support #SupportGroups #MightyTogether

11 reactions 2 comments
See full photo

the Mental Illness vs. Chronic Illness “debate”

“At least it’s not cancer” is something frustrating I’ve always heard as a chronically ill person, but something I hear even more is some variation of “you wouldn’t tell a person with cancer to get over it…” or “you wouldn’t tell a person with glasses to just see better…” while directly saying or implying that mental illness is stigmatized much more than physical illness. And after a lifetime of both severe physical and mental health issues, I *despise* this rhetoric with every bone in my body.

I’ve talked about this at times in the last 15+ years of chronic illness since my first official autoimmune disease diagnosis of Crohn’s disease, but I’ve barely written about it because it feels controversial, or like speaking poorly on something people are doing to try to mean well. I never want to push back on a seemingly good thing, but I have to say something, if only just once to get it out of my system.

DISCLAIMER: This is coming only from my lived experience in the US health system, and is not a reflection of the entire chronic illness community or any other chronically ill individual.

My potentially controversial opinion is that chronic mental health issues and chronic physical health conditions receive almost exactly the same lack of understanding from the general public and from healthcare providers. Furthermore, this lack of understanding for each others’ communities creates divisiveness in the world of speaking out about *any* chronic illness in the first place. It gives an US vs. THEM mentality to folks of varying health conditions that could find common ground in each other. If we both seek to understand each other, or you are like me and experience life in both medical spheres, this kind of rhetoric does absolutely 0% to help either efforts to educate the general public about mental illness & physical illness. There is a lot to be understood in the mental illness and chronic illness world and how they overlap / how comorbities exist more often than not.

If you’re lucky enough to be able to defy medical barriers and get proper diagnoses in the first place, you will find that the specialists that work on your various health issues will not communicate with each other. This leaves the responsibility and advocacy on you, which is a heavy burden to carry when you’re struggling with a dwindling quality of life.

For example, I am bipolar. In a 3 week stay at a mental health facility, they did not allow me to be transferred to a different medical facility to get my bi-monthly intravenous infusions that keep my autoimmune problems under control, which led to a flare up of my physical conditions that worsened my treatment in both areas. Because of that, I am terrified of ever going to a mental health facility again (aside from the already terrifying aspects of mental health care in the US.)

For another example, my diagnosis of serious mental health issues is a huge barrier to the diagnosis and treatment of my physical health issues due to that stigma. I have been medically gaslit from so many providers and told so many times that very real things are “all in my head” that I have a near panic attack every time I see a new specialist because it’s more likely to end in heartache than it is to end in feeling validated and listened to. I’ve found compassionate doctors sometimes, but it is a long road to find them.

I have a medical binder I carry to all appointments with all of my diagnoses, my medical documents from all providers, my lab work and biopsy results, etc. Then I write down all my symptoms relevant to the specialist I’m seeing so I don’t panic and forget my thoughts once I get there. Medical barriers are endless, so I will provide all evidence I have just to be taken seriously for any amount of time a doctor will listen.

Chronic mental illness and chronic physical illness can absolutely be equally debilitating, but pitting them against each other is NOT the answer we should be looking for. They are so deeply intertwined that I could not imagine my life without either. And more importantly our treatment by the general public and medical providers alike need a more nuanced and balanced view of human health.

Like I said, I just had to get this out of my system at least once in my life. If you read this, thank you for letting me ramble. This does not even begin to dissect the issue of mental and physical health and the need for comprehensive treatment. This does not touch on the additional barriers at the intersections of race / class / sexuality that exist.
It’s just a few of my thoughts so that people understand that theoretical comparisons of physical vs. mental illness don’t have any real life truth for me. Comparing my situation to cancer, or another illness of any kind, has not yielded any help or strengthened my worldview. If we can bridge the gaps in education of medical understanding to people of any kind at any capacity, even just extending your empathy for the things you may never have to understand, I’ll call that a win for everyone.

#MentalHealth #ChronicIllness #AutoimmuneDisease #CrohnsDisease #InflammatoryBowelDiseaseIBD #Fibromyalgia #PTSD #BipolarDisorder #OtherMentalHealth

34 reactions 7 comments
See full photo

Let’s talk about what your friend (it’s me, I’m the friend!) with an autoimmune disease wants you to know…

Autoimmune diseases cannot be cured with any one diet or methodology. If it could, all of us with incurable chronic illnesses would jump on board. The wellness industry is largely unregulated, often lacks evidence-based principles, and preys on the idea that certain disabilities and illnesses can be avoided. “Gut health” as an umbrella term that cannot be adequately applied to autoimmune diseases like Crohn’s and Colitis. Please do not send articles like that to me or folks with IBD. Even when it is well-meaning, it is exhausting to experience because it lacks basic understanding of the issues that are at the center of autoimmune diseases at large, which are characterized by their lifelong nature and a lack of cure. Even if you have a friend with a form of IBD that has seen vast improvements with, say, a raw vegan diet (or whatever their diet may be) and you want to share that triumph, I urge you to resist. What works for one person with an autoimmune disease will not necessarily (and often not) work for another person with the same disease. Autoimmune diseases can be “under control” at times, but they cannot be cured or officially in remission. Your friend with a specific diet might find that it stops working at any given time due to a flare-up, and folks who take certain medications can become immune to their benefits suddenly. I have been on intravenous immunosuppressant drugs for over 15 years. I was on one for 5 years that vastly improved my quality of life and then one day stopped working entirely due to a build up of antibodies. It took many years to get my Crohn’s under control again with a different drug, and any day could be the day that the one I’m on stops working too.

I don’t mean this to be negative, but only encourage you to seek empathy for chronic illness patients rather than thinking you’re helping by sending an article based on the newest wellness industry buzzwords. I know that at your core you want to be helpful to your friend or family member that suffers daily, but the most helpful thing you can do is listen to their experience. And when you listen to their experience, please understand that it is only their experience and cannot be applied to others that share the same illness.

We all want to live in a world of quick cures and absolutes. We all want to believe that we won’t one day become sick and disabled. But it is deeply harmful to perpetuate this type of idea, especially for those of us already living with invisible and incurable health problems. Conflating the idea of health (often read as: clean eating and/or lower weight) with better morality is rooted in ableism and anti-fatness, and anti-fatness is heavily rooted in anti-Blackness. Before I get carried away, these things are heavily nuanced conversations. We can unpack these things all day long, and there are many ways to seek out education that provide a deeper dive into those subjects. The point of this is, I can’t be the one to speak for everyone’s experience because those experiences are not mine. You’ll never catch me giving unsolicited heath advice of any kind or pushing the idea of cures / improvements. I won’t even want to share advice about what works for me specifically because there’s no way to know if it could be replicated in another body. All your friend with an autoimmune disease wants you to understand is this. And I’m also pretty sure anyone who has ever been given unsolicited medical advice for ANY reason begs you to do the same.

#CrohnsDisease #UlcerativeColitis #IBD #AutoimmuneDisease #chronicallyill #ChronicIllness #biologic #Infusion

12 reactions 6 comments