chronic inflammatory disease

The lack of diversity no one talks about:

Characters with:

- Epilepsy

- Diabetes 

- Psoriasis

- Rheumatoid Arthritis

- Inflammatory bowel disease (crohn’s disease or ulcerative colitis)

- Cystic Fibrosis

- Celiac Disease

- Hypothyroidism/Goiter

- Hyperthyroidism 

- Asthma 

- Paramyloidosis

- Sarcoidosis

- Multiple Sclerosis

- Amyotrophic lateral sclerosis

- Spina bifida

- Lupus 

And many more.

Nothing compares to the pain of knowing that you’re not going to get better again.

Loosing your health is really hard to deal with but you’ve got to keep pushing on.

The strongest people in the world have a chronic illness.

“Can’t Wait” cards

In the UK, Crohn’s and Colitis UK send out a “Can’t Wait” card which means you can use shop’s staff toilets if you are in urgent need of using the toilet

I asked an assistant in Zara today who asked me what was wrong with me. I showed the card and explained I would like to use their toilet as I have Crohn’s and really need to use their loo. She spoke to someone via an earpiece then told me “You can’t use our toilet as there are clothes up there. McDonalds is around the corner”

My heart sank. How I managed to fast-waddle to McDonalds will forever remain a mystery! I presented the card to a young man who automatically told me the code for the door and said “Go!”

I am eternally grateful for the immediate understanding from this kind man because there was no way I’d have made it any further without suffering the worst humiliation possible. Education is key with this disease

Having a chronic illness means having some extra “firsts” in a relationship:

The first time your partner sees you take meds, or the first time they see you give yourself injections. The first blood draw or IV setup. The first ER trip. The first time accompanying you to the doctor. The first medical procedure, and maybe the prep for that procedure. The first time they will have to assume responsibility for you after pain meds or sedation. The first surgery. The first recovery room. The first infusion or treatment. The first hospital stay. And the knowledge that these are firsts but they will happen many more times.

Not everyone can deal with all of this, be they a partner or just a friend. Some of us even have parents who can’t handle it, or don’t believe it.

I am so lucky to have found someone who has gone through all of these things with me effortlessly, and will be there for much more. And I’m lucky to have friends who “get” it.

I have to go through this, but I don’t have to do it alone.

(I posted this on Medium in case anyone wants to share it outside of Tumblr.)

There’s a couple of stages of having a chronic disease; there’s the being sick - like suddenly you’re sick and you don’t know what’s wrong. And that can be super terrifying depending on how severe your symptoms are. Then there’s the being diagnosed part which comes along with this word chronic, which inside of it hiding there is the word incurable - which no one says out loud but which is the worst word. It means, not only has your life changed, your life has changed irrevocably.
—  Hank Green on Living with a Chronic Disease

When you’re nauseous after every meal and put huge effort in eating normal - people: “Can’t be that serious. Just push yourself a little harder to eat more…”

When other people are nauseous one time in ten years: “Oh I can’t eat anything else today. That’s the worst. I can never eat that thing (that made me feel that way) again.”
- me: “Welcome to my life!”