Dealing with family and friends

    • July 31, 2015 at 1:10 am

      Hey everyone! I am a 24 year old male who over the last year and a half have been dealing with what doctors are referring to as CIDP. I’ve done tons of research on the CIDP and while I can explain it over and over again, my family and friends don’t seem to understand that I am really sick. I require a cane to get around due to numbness in my feet throwing off my balance, and my arms and lower back down are always in excruciating pain. I have recently had to go onto long term disability due to an inability to do my job. All these things though don’t seem to add up to them. They expect me to move around and do things just like normal. Be able to to everything I used to and I obviously can’t. There are days I’m not even strong enough to leave bed. How do other address this? How can I help them understand? Please help!

    • July 31, 2015 at 7:33 am

      Hi Dlockard
      All you can do is quietly explain that you cannot do some of the things you used to do, and it is very frustrating for you. Obviously they can see by the cane that it is an effort to stay balanced. I am always afraid people will think I have a drinking problem. Word of mouth to other friends can help. If people haven’t walked in your shoes they cannot feel what it is like , and often make false statements.

    • jk
      August 1, 2015 at 11:14 am

      Gather as many as you can at one time. Explain that your condition is very similar to ALS. Use Lou Gehrig’s name.

      They might start to listen. It’s sad but it is human nature that some people cannot open their minds and hearts to empathize with anyone else. Of course, some do a good job.

      Consider how all the IED blasted, limb missing Vets, Agent Orange Vets (on and on) are ignored.

      You still look healthy. I’ve gone through this for 45 years. My 2nd wife gets it. No one else, kids included has a clue. they are incapable of grasping it.

      Explain again and again. Good luck.

    • August 11, 2015 at 11:53 pm

      Hello Dlockard,

      I too have had difficulties explaining my illness to some of my friends and family and especially to my mother. Like JK wrote above, explain again and again. I went as far as to write a 12 page essay to my mother explaining my illness so she could have more information about it and the reason why I’m no the person I was 2 years ago and she still does not understand.

      I wish you the best of luck and keep explaining and if you lose friends because they don’t understand like I did they we not good friends to begin with. Keep trying to explain, I hope people listen, maybe write an essay so they have some literature in their hands to read so they not only hear what you are saying but they can see on paper what you are talking about.

      Best of luck,



    • August 14, 2015 at 2:09 am

      This is always a huge problem. I hear the words “You look so well” and similar words come to mind that friends and family say all the time while on the inside you feel like s**t! My partner doesn’t get it and calls me lazy and worse words to that effect. This makes me feel worse. There is no explaining I can do that seems to penetrate his brain. When they won’t listen I switch off and just do what ever I can. I feel your frustration. I have yet to find anyone who fully understands CIDP except my Neurologist and the nursing staff that do my infusions. Good luck, I hope the penny drops with your family. Try giving them some reading material on CIDP and see if any of it makes sense to them. Why families go into denial I just don’t know. It is a disease you can’t see or feel and if they could see it they would be more empathetic with you. Good luck!