15 Things People Don't Realize You're Doing Because of Erdheim-Chester Disease


Erdheim-Chester disease (ECD) is an ultra-rare type of blood cancer that can affect many different organs of the body and unless successful treatment is found, organ failure can occur. Like many other rare diseases, ECD is difficult to diagnose, has no known cause, and in some patients no visible signs of illness exist. Patients often live with chronic pain in their bones and muscles, suffer from balance and vision issues, and debilitating fatigue among other symptoms.

We asked our community to tell us what they do on a regular basis that other people don’t realize they’re doing because of Erdheim-Chester disease.

Thank you to those who offered responses and gave permission to have their quotes published on The Mighty.

1. “Counting down the minutes until you can get back in bed to lessen the pain but you have to work to pay for the extremely expensive medicine and travel. Yet you keep smiling because you know that there is always someone in worse condition than you.” – Dawn D.

2. “People are always telling me how great I look. It’s a compliment, inside I may feel awful!” – Janet B.

3. “Hiding how much pain you are in. People not realizing your ECD is not going away. When you make an effort with your appearance and people tell you how well you look.” – Rosalind F.

4. “Taking my desmopressin nasal spray for the diabetes insipidus. Walking slowly or needing to sit because of the bone problems.” – Suzanne A.

5. “One of the hardest things to face is when someone says something hopeful and good but realistically you know it to be untrue. What do you say? How do you handle it? If you are realistic, but of good humor, they ask “Why are you being so pessimistic?” If you agree with them, you lie! That is not being honest with them nor true to yourself! Personally, I have tried both ways and neither seem correct!” – Timothy G.

6. “Taking naps because your body needs the rest.” – Ruthann B.

7. “Unexplained choking or coughing at meals. Swaying drunk like balance.” – Richard F. Jr.

8. “People don’t realize how awful I feel every single day and the fact that this keeps me at home most of the time. I go to my doctors’ appointments and to my parents’ home to see them and that is it. I have no social life and rarely make it to family functions. This disease affects every aspect of your life.” – Iris V.

9. “Officially in remission, but still fight debilitating fatigue, balance issues and just feeling terrible most of the time.” – Phyllis R.

10. “Sleeping a lot.” – Vanessa G.

11. “[People] don’t appreciate just how much of an effort is required to do normal things. Even thinking and remembering stuff is a fight and you worry about letting people down.” – Phil W.

12. “Well, I think most clerks do not want their displays knocked over or customers to fall down grabbing clothes racks on the way down, sending all the newly hung clothes flying through the air like a rocket from a NASA space lift off to land on other customers’ heads; not to mention all the paperwork that they will have to do once the customer is out of the store, apologizing profusely, and nearly falling two more times and still causing the exact same mess. So, to prevent this I am now using a wheelchair (manual, so my legs get a work out).” – Timothy G.

13. “I often have folks ask me when I’ll come off the chemo. When I say, when I die or the side effects become worse than the disease, I’ll quit. This is not the answer they want.” – Janet B.

14. “We’ll be just watching TV, and I’ll just start crying. I HATE that. I’m normally a really happy person.” – Walter C.

15. “Just to be normal for a little while again.” – Jeffrey L.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Camrocker

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