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dear younger me...

Dear younger me,

Here are all the things I wish I could say to you.

First, I want you to know you are amazing.

I wish you truly believed that.

You’re amazing not because of what you accomplish athletically or academically, but because of who you are.

Your athletic and academic feats are amazing, but they have come into being because of who you are.

You work harder than anyone I know. You put your whole heart into everything you do. You embody loyalty and sheer persistence and care deeply about your friends.

You give everything you have to those around you, and then some.

Sometimes, and perhaps, too much.

I want to preface this letter by telling you two things…

First, I’d never assume I know how to make things feel easier.

Secondly, I want to remind you I’ve been to that place where I know you are — where I couldn’t find a single thing in this world to hold onto. Where it felt like nothing would ever be OK again. Where I felt irreparably shattered, irrevocably not enough and I wondered how to go on.

It hurts so impossibly much. More than you ever knew it could.

I promise I won’t ever try to make your struggle seem better than it is. I also know I cannot take it away from you.

What I can promise is you’re not alone.

One thing I do wish I could impart upon you is how far it can go to have grace with yourself.

I think you’re afraid you’re not worthy of love. It breaks my heart to see you terrified you’ll be abandoned by everyone you count on.

I want you to know it is not a sign of weakness to be dependent on someone.

It’s a sign of courage to love someone that much.

Here is the difference I want you to know: sometimes, the person we feel we cannot live without has become that person because we love them so much our heart would simply shatter and never be whole again.

There’s an element of beauty and powerful meaning in love and pain so great you wonder how to breathe.

Sometimes, though, the person we feel we cannot live without has become that person because we don’t believe we are enough without them. We need that person to believe we have value; that we will be OK; and that our life is worth living.

I want you to know soon you will meet amazing friends to whom you can tell your deepest fears and memories.

Who will come to know you as you.

Who will give you the courage to feel the hurt, to have compassion for yourself, to believe you’re lovable.

But right now, I know that feels almost impossible to imagine.

I know you still overanalyze every single text message you send and receive.

I know you still dissect every interaction you have with friends and you’re always left unsettled and terrified of abandonment.

These friends you will meet will help you to believe — slowly, over time, again and again — they will always be here for you.

As time goes on, you’ll find you possess incredible empathy and the courage to be vulnerable because you’ve been forced to heal from feeling like all you once believed in has let you down.

I know right it is too terrifying to acknowledge how much your trauma hurts.

I see you deny it and push it away through being hard on yourself or others, as if letting that stand in place of the much more substantive pain of events you can’t find a way to talk about. And while I’ll never be grateful for what was asked of you, the you of today is so proud of you and who you have become through all you have experienced.

You’ll have so much to give and you’ll give of it so freely.

You’ll be able to hold the pain and suffering of others without fear.

You’ll find such great joy and confidence in believing who you are is enough.

So here is what I wish you knew now, but am so excited for you to learn: you are not what happened to you.

You are not what you produce.

You are who you have become through all you have experienced and learned, and that is an extraordinary human.

This will never compensate for the pain and struggle you’ve seen and known, but it is still so good.

I’m so proud of you.

This world needs your light.

This world needs all of our lights.

And the more you believe your very light is what makes you worthy, the brighter it shines.

So regardless of any circumstance, this is what I promise you:

You are enough.

I hope you believe that in the depths of your soul.

#CIRS #AutoimmuneDisease #silentillness

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What are your favorite compression sock brands?

I started wearing compression socks very regularly after I was diagnosed with lupus last summer. The only other times I had worn them were during extended hospital stays, so wearing them on a regular ’ol Tuesday was new for me.

To be honest, I’m mad at myself for resisting them for so long (or perhaps the right phrasing is that I didn't give them very much consideration). But as it turns out, if you get the right kind, they’re comfy! They help keep the swelling down! I can feel my legs all day! Cute patterns DO exist!

So I’m curious about brands you love and can’t live without. My favorite right now is Comrad because they have really soft, low compression options. But they’re not cheap, so I also like the brand fenglaoda for the bright animal prints and reasonable price point (if I’m going to wear them, I might as well have a good time, yes?).

What about you?

#Spoonie #ChronicPain #ChronicIllness #AutoimmuneDisease #POTS #Lupus #Fibromyalgia #EhlersDanlosSyndrome #RareDisease #Disability #RheumatoidArthritis

11 reactions 3 comments
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How do you handle canker sores?

They’re like a party in your mouth! Not!

Did you know that some toothpaste and mouth rinses containing sodium lauryl sulfate, stress, and certain food sensitivities can lead you to be more susceptible to canker sores? Talk with your doctor if you experience recurring sores or have a sore lasting longer than two weeks.

#hygiene #ChronicPain #ChronicIllness #RareDisease #AutoimmuneDisease #Lupus #Fibromyalgia #selfcare

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What’s your experience with functional medicine?

As defined by the Institute for Functional Medicine, this approach to health is based in systems biology and focuses on identifying and addressing the root cause of disease — from inflammation to vitamin deficiencies. It takes into account one’s genes, environment, and lifestyle (including stress management, nutrition, and movement), but it also blends conventional medicine with more “traditional” or complementary practices and approaches.

In the most simplistic terms, functional medicine treats a patient as a whole person as opposed to dissecting one’s health organ by organ, symptom by symptom.

I’m about to see a functional medicine doctor for the first time after my rheumatologist “dismissed” me from her care after diagnosing me with lupus less than a year ago. (To be clear: I absolutely love her, but her hands are a bit “tied” when it comes to insurance approving the next tier of meds, and I have a dangerous history of medication side effects.)

And like many of you in this community, I’ve had a lot of triggering experiences across the spectrum of holistic practitioners (I once saw someone who wanted me to stop all of my medications cold turkey with absolutely no tapering plan). One of the biggest cons to seeing a functional medicine provider is cost, as it’s entirely out-of-pocket and not covered by my insurance. On the other hand, they’ve been incredibly thorough, validating, kind, and responsive. I still can’t get over the fact that when I call their office, they always answer and help me immediately. (No voicemail? No repeated attempts to communicate via the patient portal?) I’m cautiously hopeful that they’ll help me move in a better direction — I don’t have a ton to lose at this point.

I’d love to hear any tips, advice, or general experiences with functional medicine. What have you tried? What’s worked? What happened?

🤓 P.S. I have found this website to be super helpful when doing my research: www.ifm.org

#Spoonie #Lupus #Migraine #ChronicPain #ChronicIllness #RareDisease #CheckInWithMe #Fibromyalgia #AutoimmuneDisease #Undiagnosed #Caregiving #Cancer

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Update After Seeing My Doctor

I went to see my new rheumatologist today. She said my blood work was consistent, but the pain and swelling seemed like arthritis. She didn’t have any answers for me though. I know it’s never “too early” for joint pain/arthritis, but it’s not fair. I know life isn’t fair, but I wanted an answer for my hands. I hope everyone is doing well 💜
#Undiagnosed #CheckInWithMe #ChronicPain #AutoimmuneDisease #MightyTogether

13 reactions 7 comments
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My spouse is the only adult person in my physical life that understands and helps me in regards to my illness and limitations. After years of needing help and being more dependent on him, I have developed anxiety over the possibility of losing him. What wouId I do if I no longer had him in my life? How would I take care of me and my kids?

(Thank you all for being a community where I can be open and share things like this without bad judgment.)

#ChronicIllness #AutoimmuneDisease #ChronicPain #Disability #Family #Parenting

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Sometimes, pain is not temporary

For years, I’ve heard people say that pain is always temporary, and I’ve struggled to understand it because for me it’s really not. Maybe, when one has some help for what is causing the pain, then it can be more temporary. But I don’t have that help, so my symptoms and pain are constant and permanent until I do. ~

I do everything I can to try to manage the pain, but none of those things are treating the cause of it. Doctors are the only ones who have access to and can prescribe what can treat the cause of my pain. My potential relief is completely dependent on them. For years now, my pain has not been temporary even though treatments do exist. ~~

Anyone having a similar experience?

#ChronicIllness #AutoimmuneDisease #AnkylosingSpondylitis #ChronicPain

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101 reactions 34 comments
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Searching for good doctors

Does anyone know of a rheumatologist that is good at treating rheumatological and autoimmune conditions specifically in women?

#Lupus #AutoimmuneDisease #Rheumatology