If your family just doesn't understand ...

[Pistol]

I had POTS for many years now, am disabled by it and endure frequent flares. I am blessed with understanding, patient doctors and an "experienced" husband who is equally understanding. However - other family members do not understand why I just cannot function since I " look so good " ( who hasn't heard that one over and over? ) --- Recently a close family member was also diagnosed with POTS after many years of having symptoms. Although she always was sympathetic towards my situation she never truly got it. Now she told me that she can't believe how hard the symptoms are to live with and that the ignorance or others makes it that much more difficult.   She said that POTS patients seem to be so quietly brave and she now sees that everything others take for granted is a major accomplishment in many cases. --- I wanted to pass this along because I know that we all have people in our lives who just don't understand what we do to go on every day.  Keep up the good work every one!!!

[p8d]

Just what I needed after a huge row with my husband who normally is supportive but just doesn’t get the latest flare.  I actually said to him that I wished he could get it for one hour so he could understand.  Thanks for sharing.

[Lainy]

How do you all deal with comments from close family telling you you're just lazy, not trying hard enough, or calling you a "shut-in" ? 

If I had the strength and energy to go out more, I would. But they don't seem to understand how much it costs me to it.

Aside from the "spoon theory" are there ways you've explained it that helped others understand better? 

[Pistol]

I have not been able to explain it any better than showing them this site or the dysautonomia project book/site -- it is too weird/new/uncommon. Even physicians do not understand and are - still - just starting to get it. If the medical community does not understand it we probably should not expect others to get it either. We just have to find people who TRY to understand and stick to them - plus this forum is very helpful!!!! I still do not know how to explain POTS, sometimes I say it is my heart, other times it is the way my brain communicates with my heart and then other times yet it may have to do as a " nervous condition " (my least favorite!) We have to be patient with our family/ friends s well - it is not easy for them to understand either. That's why we need to EDUCATE as much as we can. But most of all - we need to try to go on everyday. ( Next time I loose hope I will need to read this post myself )!

[Mistri_The_Squirrel]

On 3/3/2018 at 12:42 PM, Lainy said:

How do you all deal with comments from close family telling you you're just lazy, not trying hard enough, or calling you a "shut-in" ? 

That would be my sister.  According to her, I'm a burden (even though she hasn't done a thing to help me, so I'm not sure why she thinks she has a right to offer her opinion).  

I'm thankful that my mother was in the room when I had my tilt.  If she hadn't been, I doubt she would believe that there is anything physically wrong with me.

My mother has been really supportive lately, and it has surprised me.  Neither of us speak to my sister much because of the way my sister criticizes us about things that aren't her business.

Last week my sister sent me a series of text messages telling me what a selfish piece of **** I am.  I'm just trying to survive.  I have been for a long time.  I don't plan on having a relationship with her anymore. 

[bombsh3ll]

it is really hard but I would limit the time and energy spent on/with people in your life who don't at least try to understand. 

I find directing people to online resources explaining the condition helpful. It is easier than trying to explain it myself and can seem more credible to people if on a medical/scientific website. Whether they bother to read it is a good indicator of their attitude and if they genuinely care for you. 

I have always been close to my dad, and he provides a lot of day to day practical help in my life. He can however be very insensitive, making comments like "why don't you go and have a game of badminton", "what about trying a hypnotist" & "you seem to just sit around a lot" and repeatedly asking my to explain my condition. Just when I think he has got it, he'll do something like shout at me for knocking his feet whilst desperately trying to pull out a kitchen stool to sit on to avoid a collapse. 

I think I probably should be more patient with my dad though, as I know I can be short tempered when I can barely function and he is preoccupied with very trivial concerns over his own health like a one day belly ache or his dentures not fitting properly. He is 77 and walks several miles a day, never having known barely a day's real illness in his life. He has bad varicose veins and a small asymptomatic aneurism, and I can see that I get EDS from his side, but it has never caused him any limitations. If I am honest it is probably partly because I am jealous.  If he makes an inappropriate or hurtful remark now, I try to ignore it rather than take the bait. 

I have never been that close to my mum, but she has dealt with my illness a lot better. She has never made an issue about me needing to use a wheelchair. 

Having a chronic illness has helped me learn what and who really matter in life, and I have become a lot better at asserting what I need and what I can and cannot do. 

I have wished many times that there was some way I could have people sample POTS for an hour or so, like a mega dose of furosemide or temporary bilateral carotid artery clamp 

 

 

[Mistri_The_Squirrel]

On 3/5/2018 at 10:22 AM, bombsh3ll said:

it is really hard but I would limit the time and energy spent on/with people in your life who don't at least try to understand. 

I find directing people to online resources explaining the condition helpful. It is easier than trying to explain it myself and can seem more credible to people if on a medical/scientific website. Whether they bother to read it is a good indicator of their attitude and if they genuinely care for you. 

I have always been close to my dad, and he provides a lot of day to day practical help in my life. He can however be very insensitive, making comments like "why don't you go and have a game of badminton", "what about trying a hypnotist" & "you seem to just sit around a lot" and repeatedly asking my to explain my condition. Just when I think he has got it, he'll do something like shout at me for knocking his feet whilst desperately trying to pull out a kitchen stool to sit on to avoid a collapse. 

I think I probably should be more patient with my dad though, as I know I can be short tempered when I can barely function and he is preoccupied with very trivial concerns over his own health like a one day belly ache or his dentures not fitting properly. He is 77 and walks several miles a day, never having known barely a day's real illness in his life. He has bad varicose veins and a small asymptomatic aneurism, and I can see that I get EDS from his side, but it has never caused him any limitations. If I am honest it is probably partly because I am jealous.  If he makes an inappropriate or hurtful remark now, I try to ignore it rather than take the bait. 

I have never been that close to my mum, but she has dealt with my illness a lot better. She has never made an issue about me needing to use a wheelchair. 

Having a chronic illness has helped me learn what and who really matter in life, and I have become a lot better at asserting what I need and what I can and cannot do. 

I have wished many times that there was some way I could have people sample POTS for an hour or so, like a mega dose of furosemide or temporary bilateral carotid artery clamp 

 

 

Oh, yeah...I don't talk to my sister anymore.  Along with my POTS, I'm dealing with some pretty severe anxiety and depression.  And I know my antidepressant (Pristiq) is aggravating my POTS symptoms, but the degree of anxiety and depression I have is too great to abandon the medication.  (I do have to talk to my psychiatrist about some sort of change in the medication, but he is on vacation for another 10 days and has no one on call for him. ) I had to go down to 25 mg because of my POTS, and 25 mg is not enough to keep me functional.  I can honestly say that the depression and anxiety have been worse than the POTS for me.  When I was doing better psychologically, I had hope that things could improve and I felt good about the simple pleasures in my day.  I had a positive attitude and was always able to think of things to be thankful for.  I am struggling so much now, and there has been no change in my situation other than the reduction in my antidepressant.  There is no earthly reason for me to be this depressed and anxious, so I know it is chemical.  (I have stress in my life, but my life is not that bad for me to be feeling this awful.)  I also have to go for a cortisol blood test, which may shed light on how bad I feel.

I think I will print out some info on POTS for my mom to read.  She reads the paper or random pieces of mail when she eats her cereal.  Maybe if I print a few things out, she will read them when she's eating her cereal.  Things are going pretty well between us now.  I would like to keep that going.  If she says stuff that's insensitive, I will have to do my best to either ignore it or calmly explain what is going on with my POTS or anxiety that is causing me to not function well.

Even if my sister experienced what it's like to feel how I feel for a week, it wouldn't change anything.   She is determined to think of me as a piece of garbage.  She works a lot of hours and has a lot of stress in her life, and I think her anger sustains her.  When I was angry all the time, I felt more powerful, more in control and more energized.  I'm wondering if the same is true for her.  Whatever the case is, I can't do anything about it.  I just have to stay away from her.  

[bkweavers]

I'm with Bombsh3ll! My daughter had POTS for close to 8 years starting at the age of 11yrs. She wasn't upright for 3 and a half years and was so miserable from her many symptoms. Relatives close to her saw all that she went through and yet, they were the ones who we ended up fighting with because they just didn't understand the limits of this illness! Our relationship with them has never really been the same.  I've learned that those who really "get it" and offer continued support are the ones who I value and keep close. Now, that I've been diagnosed with IST, I don't even try to explain or talk about my health issues with those family members. I don't think it's even worth my time and energy as they will never really understand. They certainly never ask me how I feel. I just think some people can't handle a long term illness. They are just not strong enough for it.