What do you wish people understood about CIDP?

General General CIDP Discussion
1

Hi all,

I've welcomed a number of family and friends of individuals with CIDP who are trying to understand this disease. I thought I would pose the question to you: What do you wish your family/friends/coworkers/caregivers/nurses understood about CIDP? This could be a really helpful thread for others in our community.

Let me know your thoughts!

CG

2
  1. Bringing food, mail, etc., is nice. Removing them when we’re done is extra nice. We can’t do anything with this stuff but let it pile up.
  2. When emptying the bed side trash, try not to leave the trash can in the path of our walker.
  3. If we use something every day, then you move it, we will want or need it, and we can’t go looking for it.
  4. Leave nothing on my side of the bed where I sit or it might get crushed.
  5. Asking what we need at the store an hour before you leave is great. A 5-minute heads up is not enough.
  6. When even a small request elicits slight grunts, groans, and sighs, just know such responses are like rampaging buffalos in our ears.
  7. It may seem hard to believe at times, but we honestly don’t sit around thinking up ways to keep you busy.
  8. We may be lousy at expressing gratitude. Or at expressing our thanks in unique and colorful ways. The truth is, there just aren’t words for all you do for us.
3

Thanks for your reply, Georgia guy!

4

That the real struggle is mental, not the visible one.

4 Likes
5

That really young people have it too. My daughter just turned 20. Her arms and hands are affected the most. She looks athletic and strong so people don’t seem to know how to react to her illness. She is surrounded by older people during her IVIG treatments, and mostly males. She feels that people don’t know how to react to a young female with this disease and it’d difficult for her to know how to plan her future at University or her relationships. She’s facing so many unknowns that her physical disease is hard but so is the toll on her emotional state.

6

Lack of understanding from others and Chronic Depression within I would say are the two biggest hurdles one has to tackle.

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Hi springmang, thanks for your reply. Most people have a difficult time understanding CIDP because they’ve never heard of it before. And like familyfive said, it isn’t something you can see. I hope you are doing well.

CG

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That even though I “don’t look sick” I am. It’s a terribly painful disease and I struggle every single minute of every single day. It’s EXPENSIVE to have this disease and I worry a lot about the future. I’m doing the best I can.

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That my family stop making me feel like I am stubborn… That I am use less… Just because I am not able to walk a lot and work or travel. They see like “You are okay… Walk! Get up!” They just do not get it… I am in unbearable pain in all my movement. It is not the physical pain more on emotional help I need not rehab.

10

You try to use the least amount of pain meds but it says it is good for 8hrs then in 4hrs the pain will return and you make it 6hrs or break down and try something else to relieve the pain