Rare Disease

#BehcetsDiseaseWhen Stanford diagnosed me with Behçet’s at seven years old, I had absolutely no idea what I was being handed. I barely knew how to pronounce it—especially because everyone seemed to pronounce it differently. I certainly didn’t understand that this would become the most misunderstood disease of my life. Behçet’s isn’t just sores and embarrassment. Try losing your teeth, having pieces of your tongue fall away, losing more than 90% of the vision in one eye, dealing with blood clots, heart disease, neurological complications, brittle bones and days when walking becomes difficult. Then add the other diseases and conditions that seem to travel alongside it, and you’re left wondering how one body can possibly hold all of this. I’ve spent decades being tested, retested, doubted, relocated closer to hospitals that understand rare disease, and becoming an unwilling expert in my own body. Behçet’s doesn’t just mutate—it humiliates, consumes, and invites complications I never asked for. It’s a continual inexplicable battle.

If you've ever quit something difficult and immediately felt relieved, there's a reason for that.

When something makes us anxious, uncomfortable, or afraid, walking away removes that discomfort. For a moment, we feel better. And because relief feels rewarding, our brain can start learning that avoiding difficult things is the fastest way to feel safe again.

That's why I don't think beating yourself up for quitting helps. Understanding the pattern does. The more often we escape discomfort, the easier escaping can become. But the opposite can be practiced too. We can learn to stay with something uncomfortable for a little longer and discover that we are capable of handling more than our mind initially tells us.

This matters in depression recovery too. Taking care of yourself, asking for help, changing old habits, or facing something painful can all feel harder in the short term than avoiding them. But short-term relief and long-term healing are not always the same thing.

So next time you feel the urge to quit something that genuinely matters to you, give yourself five minutes before deciding. You may still choose to walk away, but make it a decision rather than an automatic reaction.

What's something important you've been tempted to give up on lately?

Also, if you're going through a tough time right now, I want you to know that I post daily mental health videos about how to deal with painful thoughts. So if you or anyone you know is struggling and wants help, click on one of the links below or write me if you have any questions you want me to answer:

www.instagram.com/thomas_of_copenhagen

www.tiktok.com/@thomas_of_copenhagen

~ Thanks to all. Thanks for all. ~

#MentalHealth #MentalHealth #Depression #Anxiety #BipolarDisorder #BorderlinePersonalityDisorder #Addiction #dissociativedisorders #ObsessiveCompulsiveDisorder #ADHD #Fibromyalgia #EhlersDanlosSyndrome #PTSD #Cancer #RareDisease #Disability #Autism #Diabetes #EatingDisorders #ChronicIllness #ChronicPain #RheumatoidArthritis #Suicide #MightyTogether

Living with a health condition or disability can change us. Depending on what we’re experiencing, it often comes with valuable—and sometimes uncomfortable—lessons we carry forward. Different seasons of our lives bring different lessons.

Mighty staffer @sparklywartanks is currently learning that she has to speak up for herself when she needs something. She can’t do everything on her own, especially as her symptoms become more challenging to navigate.

What’s a lesson you’re learning?

#MightyMinute #CheckInWithMe #ChronicPain #ChronicIllness #Disability #RareDisease #MentalHealth #Anxiety #Autism #Parenting #PTSD #ADHD #BorderlinePersonalityDisorder #BipolarDisorder #ObsessiveCompulsiveDisorder #EatingDisorders #Depression #Fibromyalgia #Lupus #MultipleSclerosis #Migraine #Spoonie

Paying attention to our body’s signs and signals is a great way to know if we’re approaching our limits. From our energy levels, to where we feel certain sensations or pain, to the types of thoughts we’re having — all are indicators that let us know it’s time to slow down.

Mighty staffer @sparklywartanks knows it’s time for her to slow down when she feels overwhelmed, is overly critical of her work, or she’s finding it difficult to get out of bed.

#52SmallThings #CheckInWithMe #Selfcare #MentalHealth #Disability #ChronicIllness #ChronicPain #RareDisease #Anxiety #Depression
#Autism #Parenting #PTSD #BorderlinePersonalityDisorder #BipolarDisorder #Fibromyalgia #Lupus #MultipleSclerosis #Migraine #Spoonie

Sometimes the most exhausting place to be is inside your own head. You replay conversations, worry about things that haven’t happened yet, question decisions you already made, and spend so much time thinking that you end up feeling drained without actually solving anything.

Something I’ve learned is that you don’t have to figure out every thought that appears. You don’t have to argue with it, fix it, or follow it somewhere. Sometimes you can just notice that your mind is going again and bring yourself back to what is actually happening right now.

The thoughts may still be there. That’s okay. The goal isn’t to have a perfectly quiet mind. It’s to get better at deciding which thoughts deserve your attention.

What helps you when you get stuck in your own head?

Also, if you're going through a tough time right now, I want you to know that I post daily mental health videos about how to deal with painful thoughts. So if you or anyone you know is struggling and wants help, click on one of the links below or write me if you have any questions you want me to answer:

www.instagram.com/thomas_of_copenhagen

www.tiktok.com/@thomas_of_copenhagen

~ Thanks to all. Thanks for all. ~

#MentalHealth #MentalHealth #Depression #Anxiety #BipolarDisorder #BorderlinePersonalityDisorder #Addiction #dissociativedisorders #ObsessiveCompulsiveDisorder #ADHD #Fibromyalgia #EhlersDanlosSyndrome #PTSD #Cancer #RareDisease #Disability #Autism #Diabetes #EatingDisorders #ChronicIllness #ChronicPain #RheumatoidArthritis #Suicide #MightyTogether

Happy Monday, Mighties!

It’s time for a new self-care challenge! This week’s #52SmallThings theme is prevention.

Let’s start our week off by talking a bit about stress management — what it is and how we can take actionable steps to stop it in its tracks. Although not always preventable, we may find ourselves experiencing some level of stress on a daily or weekly basis (which is totally normal, by the way!). What’s most important is exploring what ways are best in managing that stress, and that may look different for each of us.

What coping strategies do you find most effective in calming yourself during stressful situations?

#52SmallThings #CheckInWithMe #Selfcare #MentalHealth #Disability #ChronicIllness #ChronicPain #RareDisease #Anxiety #Depression
#Autism #Parenting #PTSD #BorderlinePersonalityDisorder #BipolarDisorder #Fibromyalgia #Lupus #MultipleSclerosis #Migraine #Spoonie

These are pictures of my Rosemary from this year's spring. I planted some in the back that will bloom next spring then blue will be everywhere 🙂💙#MentalHealth #RareDisease