How to Explain Pain to Others

My husband is 39 & has CIDP. The past year his symptoms have sky rocketed and his pain level is high. He's a teacher and really concerned about making it back to work with the new school year in about a month. My parents are very unsympathetic to his & our circumstances. Putting aside how much that infuriates me... any time I tell my folks that hubby's not doing well and give examples of what is too much for him to handle, they have several responses. They don't understand why the pain is so debilitating or why hubby can't just suck it up and push through it. My mom has dealt with chronic pain, arthritis and sciatica for almost 2 decades. Many of the symptoms she complains about to me sound just like my hubby.

When talking to my dad tonight about my mom's bday plans for tomorrow, I had to let him know that we would not be able to participate with the majority of the plans. He replies by questioning that hubby seems to have a low pain threshold. After pausing to recompose from feeling like getting slapped in the face, I replied that seemed irrelevant. Low or high pain threshold - it's his perception of the pain, so does it really matter what type of threshold he has...?

I see him and how much he is struggling daily. I see how much he can't do any more. And how much he tries. I have been on disability for 9 years for fibro/chronic fatigue, so I know first-hand how some days are better than others and it's confusing to others.

But, how do you explain someone else's pain with this so that they can understand or at least have some empathy?

To be perfectly honest with you if they have'nt realised by now what its like for your husband they probably never will.

I have given up on trying to make people understand how it feels, because 99% of people just wont get it. CIDP is one of those things that cant be seen and this is where a lot of people find it hard to understand. before I was struck with CIDP I would have thought it was impossible to go from perfect health to crippled and in constant pain overnight.

It seems that the issues are your parents not yours and I would suggest that maybe you and your hubby write them a letter explaining to them that their dismissal of your husbands condition is upsetting to you and maybe then they will try to understand better or if they don't respond positively then you might just have to face the facts they either don't care or don't understand. You have to do whats best for you and your husband and if that means saying No then say it and don't feel like you have to explain yourselves to people who wont understand anyway

You shouldn't have to. I'm sorry they are unsympathetic. Sometimes, it helps to hear the Doctor explain how much pain they are in. Maybe your parents could go to the next dr. appt and hear the dr. explain that CIDP is very very painful. Your husband is very young to be suffering so much. I hope they come around and start understanding. At this point, they aren't well informed with CIDP, or they wouldn't say what they are saying.

Praying you get support. It's out there.

Mary.

4leafclover,
Like Mary said so well above, "At this point, they aren't well informed with CIDP, or they wouldn't say what they are saying." This is partly due to the fact that CIDP is extremely rare and most fplks just have never heard of it. I certainly had never known anyonw with it, read about it or anything until I got it.

I would put together some informative resources, including perhaps, access to this site. Tell them that you need them to educate themselves about this disease. If they approach it openly and do indeed learn a little about it, great.
Good luck. Everything is easier with family on your side.

Thank you all. The relationship between my hubby & parents is strained at best and we've been married for 14 years. We almost got divorced a few years ago & my folks can't seem to let it go or anything else they perceive he's not done right. My mom has read and even shared links with me about CIDP, so she "knows" as much about it as I do.

But she does not LIVE it with him every day. I seriously doubt my parents will ever understand. They had a hard time wrapping their heads around how debilitating my fibro was in the beginning. The only thing that helped convince them was me qualifying for SSD at 29 years old. I guess I just wish there was some way to explain what he's going through in a more concrete way.

As far as them going to an appointment with him - won't happen period. His mom's here visiting from out-of-state and told him that she wants to go to try to better understand what she's seeing (and how much he's changed just since the holidays). He is flat out refusing to let her go. I have no idea why he'd do that with his own mother. I know why he'd say no to my parents going, which they would not likely do anyway.

And for the letter. Been done. I wrote a letter to both our families & closest friends over 2 months ago. The only one in my family that has even acknowledged the letter is one of my brothers. Several of our friends of made offers to help and some of followed up with coming over to help out around the house. Our friends have done more for us than my family.

In that letter, I ended with this : "We are doing the absolute best we can. Over the last few months, we have both been in conversations that have made us feel defensive of our circumstances. We are both giving people by nature and it bothers us that we can’t do more right now, but this is our reality. To be made to feel guilty by others that have no idea what our life is (or just don’t understand the magnitude), we find unfair and judgmental of the ones making those comments. We do not need or appreciate being judged for not doing enough for whatever reason. We are doing the best that we can. We need to know that we are being supported whether in person or spirit. We are deeply appreciative of the help that we do receive. We try to be optimistic, grateful and make the best of what we’ve got daily. Some days it’s damn hard &knowing that we have such a wonderful support group is priceless. So for that, thank you."

A support group, whether family, friends, or NEW friends who understand the disease, is so valuable. This is a good place to get some understanding. Glad to hear your friends have been helping out. Family isn't always the best resource.

4leafclover said:

Thank you all. The relationship between my hubby & parents is strained at best and we've been married for 14 years. We almost got divorced a few years ago & my folks can't seem to let it go or anything else they perceive he's not done right. My mom has read and even shared links with me about CIDP, so she "knows" as much about it as I do.

But she does not LIVE it with him every day. I seriously doubt my parents will ever understand. They had a hard time wrapping their heads around how debilitating my fibro was in the beginning. The only thing that helped convince them was me qualifying for SSD at 29 years old. I guess I just wish there was some way to explain what he's going through in a more concrete way.

As far as them going to an appointment with him - won't happen period. His mom's here visiting from out-of-state and told him that she wants to go to try to better understand what she's seeing (and how much he's changed just since the holidays). He is flat out refusing to let her go. I have no idea why he'd do that with his own mother. I know why he'd say no to my parents going, which they would not likely do anyway.

And for the letter. Been done. I wrote a letter to both our families & closest friends over 2 months ago. The only one in my family that has even acknowledged the letter is one of my brothers. Several of our friends of made offers to help and some of followed up with coming over to help out around the house. Our friends have done more for us than my family.

In that letter, I ended with this : "We are doing the absolute best we can. Over the last few months, we have both been in conversations that have made us feel defensive of our circumstances. We are both giving people by nature and it bothers us that we can’t do more right now, but this is our reality. To be made to feel guilty by others that have no idea what our life is (or just don’t understand the magnitude), we find unfair and judgmental of the ones making those comments. We do not need or appreciate being judged for not doing enough for whatever reason. We are doing the best that we can. We need to know that we are being supported whether in person or spirit. We are deeply appreciative of the help that we do receive. We try to be optimistic, grateful and make the best of what we’ve got daily. Some days it’s damn hard &knowing that we have such a wonderful support group is priceless. So for that, thank you."


Agreed Marv. It's disappointing to think that your own family can't or won't be there. I'm trying to let it go. It seems to be the season of letting go!

On the flip side: My in-laws bought a house near us a couple years ago and have a 2 year plan to move once the house is fixed up & fil retires. My visiting mil told me today that she wants to hear the nuts & bolts of what's going on with hubby & his prognosis long-term. She's ready to move up here in the next couple months by herself, if we tell her we need her to. I've explained to her my understanding of the unlikelihood of getting a prognosis from the doctor. That unknown factor is what is eating at her and us. Not knowing if he's going to be able to get to work with the new school year and all the negative implications that will have for our family is just... well - it feels like we're watching a slow motion impact with a brick wall. We've been knocked down before and got through it. But that was pre-kiddos. There's a lot more riding on it this time.
Marv said:

A support group, whether family, friends, or NEW friends who understand the disease, is so valuable. This is a good place to get some understanding. Glad to hear your friends have been helping out. Family isn't always the best resource.

4leafclover said:

Thank you all. The relationship between my hubby & parents is strained at best and we've been married for 14 years. We almost got divorced a few years ago & my folks can't seem to let it go or anything else they perceive he's not done right. My mom has read and even shared links with me about CIDP, so she "knows" as much about it as I do.

But she does not LIVE it with him every day. I seriously doubt my parents will ever understand. They had a hard time wrapping their heads around how debilitating my fibro was in the beginning. The only thing that helped convince them was me qualifying for SSD at 29 years old. I guess I just wish there was some way to explain what he's going through in a more concrete way.

As far as them going to an appointment with him - won't happen period. His mom's here visiting from out-of-state and told him that she wants to go to try to better understand what she's seeing (and how much he's changed just since the holidays). He is flat out refusing to let her go. I have no idea why he'd do that with his own mother. I know why he'd say no to my parents going, which they would not likely do anyway.

And for the letter. Been done. I wrote a letter to both our families & closest friends over 2 months ago. The only one in my family that has even acknowledged the letter is one of my brothers. Several of our friends of made offers to help and some of followed up with coming over to help out around the house. Our friends have done more for us than my family.

In that letter, I ended with this : "We are doing the absolute best we can. Over the last few months, we have both been in conversations that have made us feel defensive of our circumstances. We are both giving people by nature and it bothers us that we can’t do more right now, but this is our reality. To be made to feel guilty by others that have no idea what our life is (or just don’t understand the magnitude), we find unfair and judgmental of the ones making those comments. We do not need or appreciate being judged for not doing enough for whatever reason. We are doing the best that we can. We need to know that we are being supported whether in person or spirit. We are deeply appreciative of the help that we do receive. We try to be optimistic, grateful and make the best of what we’ve got daily. Some days it’s damn hard &knowing that we have such a wonderful support group is priceless. So for that, thank you."