How Do You Make Your Family Understand?

[puppylove]

I love my siblings and my parents and even though they all try they don't understand this syndrome very much at all. I try to explain it to them and of course my parents researched the heck out of it and took me to zillions of doctors etc. but they don't understand living with it. I get in to arguments with my mom all the time because she wants me to push myself to do things. Basically all I accomplish on a day to day basis is getting dressed and some home work so I know what she is saying. I try to do things with my family when I feel up to it but that's barely ever. My siblings get upset when I don't have to do my chores because I'm to nauseous to do them.When ever I try to discuss what it's like with them it ends up in an argument also. I know I complain a lot and that really annoys them but I'm trying to work on that. I guess some of it could be that they miss the old me just like I do. Does any one have any ideas on how I could explain this to them with out it resulting in fighting?

[GingerA]

I don't really think that there is a way to explain it. Even when people think they understand they really don't. You just have to learn to put yourself first and do what you can and no more. I know its tough to live with someone who doesn't get it but all you can do is say this is the way it is and I can not get better if I am pushing myself beyond my limits. I hate that you have to deal with this.

[janiedelite]

GingerA has a good point... you really can never make someone understand how you are feeling. I think it can be helpful if, when someone wants you go do something you're not well enough to do, that you let them know you want to be able to help, you're sorry that they have to take on the extra load, and do what you can to show that you care for them or thank them. It might just be a note slipped in their lunch, a thank you email card, or just an extra hug. It can be really frustrating, especially with siblings, when you are perceived as not doing what you could. For me, it's been really helpful to make the extra effort to show those people how much I care for them, even if it's just words, phone calls to see how they're doing, or a note.

After you've done all that you can to facilitate a loving relationship and if that person is still angry because you're not physically able to help, try not to feel guilty but do what you can to encourage yourself. The forum is always here if you're having a hard time, or you could escape in a good book or TV show.

One thing I've learned after being sick with this for over 5 years is that my relationships with the people I love are the most precious thing to me. They'll never really understand how I feel day after day, but I try to patiently remind them when they forget and wonder why I can't do such-and-such. They live in normal, healthy bodies that can eat, play, do what they want when they want. Feeling sick all of the time is totally foreign to them. I don't care if my family knows exactly how I feel all of the time, as long as they're willing to love me and include me in their lives.

I'm sorry that I don't have a straight answer for your question. You're really young to have to go through this degree of chronic illness. Hopefully your body will start cooperating some day and you won't need to practice this degree of patience with your family anymore.

[blueskies]

Dear puppylove,

I really do feel for you. I was diagnosed 5 years ago with POTS (although I've had symptoms -- less severe -- for much longer). At first it was a relief for me to be able to tell my family that I had a 'real' illness. They were all convinced it was in my head until then. But, except for one, my family -- parents, 3 sisters, husband and 3 adult kids never did come to have any understanding of it at all. They see me on my good days and assume that if I just push myself on my bad days I should be okay. But one of my sisters has been a tremendous support for me. She will drive me places occasionally. But mainly her support has been talking to her about the difficulties of living with pots. She's been very good at listening. And I try very hard to return the favour and listen to her about her life problems.

I also have a psychiatrist I see fairly regularly and he helps me 'see straight.' He's really good at making me realize when I'm beating myself up and engaging in what he (and my pain specialist) call 'magical thinking' -- I tend to start to think that my symptoms aren't that bad and then beat myself up because I feel like a failure because I feel like I'm over-reacting. My psychiatrist is very good at reminding me that he's seen me fall down, suddenly and without any warning (that was before I learned my warning signs). My pain specialist has been very good in insisting that my pain is very real and that I not try to ignore it but rather take the pain meds he prescribes, so that I don't end up in more severe pain.

So, I have two people in my life who help me stay sane with this thing and stop me feeling like a failure and, especially through talking with my psychiatrist, learning how to say no to people asking me to do stuff when I just can't without me feeling guilty. Or even worse, pushing myself to do things with/for them because I didn't want to disappoint them and paying for it big time later.

[jangle]

Puppylove, as has been stated before it's pretty near impossible for them to empathize with you, but it does sound like they're sympathizing with you. But it's difficult to understand the extent of the pain associated with this illness if they don't have the perspective of feeling it.

But also you have to realize that you can't live life in a bubble, and you are going to have to pull into the pain. It's not pleasant at all I know, but it's something we're going to have to do. The alternative is to not live life and that is not acceptable either.

I'm trying really hard to figure out a way from this pain as I'm sure everyone is on these forums. Right now the best advice I can give you is to start your own exercise program. I don't want to tell you what to do with it because honestly some of the therapy is involved in you determining that for yourself. It gives you back some control over this thing and all I can tell you is that so far it is alleviating my symptoms and I believe it can for you as well.

So maybe focus your energy into your own exercise program, motivate yourself to do a little more each day and know that cumulatively it all adds up and eventually will lead to you getting better.

[roxie]

Oh gosh, blue- I do that too... Ignore my pain or moreso than that I'm telling myself I'm a wimp.

Puppylove, this is a hard situation. It's one thing to deal with ppl who don't understand that you just know. It's another thing when you have to live with them.

I was sick & homebound as a teenager as well. Its it's own ball of wax. There were times I felt my parents and brother haven't understood. I don't know that anyone ever truly will.

Everyone above is right on in saying you cant make them understand.  And like Jangle said they may be trying to sympathize. They may not know how.

I remember when I was a teenager all my friends left.I never heard from anyone. For a while I went out of my way and would call them. They'd say they were busy & would call back.....they never did. One time my mom was at church & the pastor said something about me and asked how i was doing or something and my mom told him the thing I need most in my life was understanding & friendship from people my age. The pastor said "we don't know how to do that".  But people would wonder why I never was really interested in youth group. It had a lot to do with the way I was first stated at and then ostracized.     As hurtful it was and I am sure is for you, there are people that don't know how to sympathize/empathize with people who have limitations.

 It's all the harder when they are your family. Their misunderstanding may have more to do with them than you.

As others have said they best thing you can do is focus on yourself and getting your body stronger. 

Your mom may also thinks she's encouraging you saying you have to push yourself when you feel it's overbearing. My mom tells me things like that and I get annoyed like yeah she's not going through it, I do push myself.  And i also have to live with myself when I do too much.

Hang in there!

[roxie]

Here's a good blog post on how this woman started to get stronger after being bedbound. I was inspired!

http://potsgrrl.blogspot.com/2012/01/exercise-for-potsies.html

[Katybug]

puppylove,

I agree with everyone above that no one can really walk in yor shoes so they can not truly "get it." Bu, haveou considered asking your parents, or even just the one parent you are closest to, to go to some family counseling with you? There are counselors that specialize in helping people and their families learn how to adjust to a chronic illness. If a parent is willing to go, then maybe the can help your siblings or eventually include them. You may have to phase the request in a way that is more palatable to them, like, "Will you go to counseling with me, so that I can learn how to express myself better to you?" Often people are more willing to participate when they don't feel like the finger is being pointed at them.

Also, if you haven't had it shared with you before, here is a copy of a story called, "The Spoon Theory". It may help you explain to your family in a way that they can relate. http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

[CharmedLinz]

this was the first time I read the spoon theory and I love that article....thanks for posting.

What I was going to say is that I tell most people that it's like living with a really bad case of the flu, a head cold, and a nasty stomach bug all at the same time.

That usually makes them stop and think.

[Elfie]

I understand how very difficult life with POTS can be and how it is difficult to want to do anything (and I am one of those people that before POTS enjoyed doing things like scrubbing the tub-- so it doesn't take much to motivate me when I'm feeling up to snuff-- absolutely not a naturally lazy person).

That said, sometimes you have to push yourself. I'm with Jangle--- unless pushing yourself is going to cause dangerous symptoms (like frequent faints) or is putting you into flares that mess you up with days, sometimes you absolutely have to do more than you feel like doing with POTS. For example, is there a reason you can't do your chores because of nausea? Does the activity make you vomit, for example? I go through periods of time with horrible nausea, but generally can keep myself from vomiting if I avoid eating in the A.M. Working through the nausea is unpleasant, but for me it isn't dangerous and doesn't make the nausea or other symptoms much worse. I can understand being unable to do certain highly mental tasks because of discomfort (it is distracting-- very hard to remember what you read or do math when feeling very crummy) but I'm able to do mindless things like chores (esp. ceartain chores that don't require standing or lifting or I can do while constantly moving around to utilize the muscle pump effect) even when I am having lots of symptoms as long as my bp and hr are somewhat stable and i'm not fainting. Is it possible to trade chores with siblings so you are only doing ones you can handle? Or maybe your parents could "make up" some chores for you to do that are manageable so the siblings feel like you at least have some responsibilites too. For example, maybe you could be in charge of brushing the dogs--- which, depending on the breeds and the manners of your animals, isn't too tiring and can be done on the floor. If you can sit, doing the dishes while sitting on a stool may be an option. Exercise can help, and at least your mom might think you are working towards something.

That said, it is very hard to make people understand what you are going through. My family doesn't "get it." I've had better luck explaining it to friends-- but then again, most of my friends are adults and have a greater amount of life experience than the average teen.

Statistics and catch phrases from studies can sometimes be helpful-- I have some geeky friends, and the numbers on hypoperfusion and studies that compare POTS functioning to ppl with COPD and other respiratory diseases and stage III and IV CHF really seem to have struck a cord with them.

I have several friends that have watched grandparents or parents struggle with COPD or other lung diseases, CHF, or cancer (or even other nuerological conditions and autoimmune diseases like MS and lupus). Having those statistics that compare quality of life to CHF and COPD and then additional studies that compare those conditions to whatever friends or family are familiar with can sometimes help them realize that POTS can make you seriously sick. Or at least you can point out symptoms you have in common. I have a new aquaintance that has CF and has had a lung transplant, and I am fairly sure he could relate very well to what I deal with.

Also, by the time you're in your 20s or 30s, there are more people that have dealt with stuff like chest infections and things that can cause SOB and chest pain. Having POTS is kinda like having a killer respiratory infection, and a migrane, while running an 4 minute mile. I've also had friends stand and hold their breath (somewhere safe with a soft floor) until they start to loose their vision or gray out and then have them try to function or do something that involves brain power (selecting the right package off a shelf, for example)-- which is a really good was to induce mild hypoxia.

I've also had other POTS patients compare it to waking up with the worst hangover of your life every day. I'm not sure this is as apt a description, but it might help if your parents ever went through a drinking stage in their youth.

That said-- I still have the parent that says "if you'd just get up and about you'd feel better."

[comfortzone]

I thought it was really sweet of you to write here and ask people what they thought and for suggestions - that just shows how wonderful you are!! I don't know how old you are but it sure would be nice if you had someone to talk to on a kind of regular basis as some of the posters here mentioned... someone totally "on your side" someone who works for you to help you live your best life in the present moment. Whether its a counselor at school or a nurse or a psychologist - or a person that works with youth at church - it would be great because they could help you to see what a celebration life is no matter what our circumstances ~ and that you are so so SO precious... irregardless of physical symptoms. Additionally they could be your support - your team leader - your coach in dealing with relationships - family and otherwise.

There are skills that can be developed - by anyone in a family to help things go more smoothly that a counselor can teach. Everyone in a family has a 'role' and is important - having everyone come together in a healthy fashion is what these skilled therapists can do. It might be the person meets with you alone at first - and then later invites mom/dad and sibs... but you call the shots there based on how you are coming along with your relationship and trust with the counselor.

It would be really nice too if you could get to some kind of physical therapy or prescribed activity if a doctor believes it would be helpful. That way you are under the watchful eye of a medical professional when you are riding a recumbent bike or walking a treadmill etc... But to be encouraged to move your body while also being safe in the hands of a PT might be just the ticket to show everyone that you are doing what the doc wants, you are trying to improve your health - and you will also be supported if your efforts are too taxing and you need to progress ever yet more slowly - sometimes just one minute at a time more activity is enough to move forward - yet not have you do too much.

Also depending on your age - and your involvement in the community - either at church or with friends - sometimes it's good to plan time away from your family. Like camping or a retreat. You may not be able to do all the things everyone else is doing - but you will be out of the house and out of the watchful gaze of the family - free to try things and free to just be yourself around other people your age - healthy or not so healthy - everyone needs a break in the routine now and again - its just good for the soul....

So hopefully everyone can start fresh - everyone forgive after the yelling etc.. and come to a decision to not allow things to blow up like that - it's really just not worth the energy - when you could be doing something more fun... even if it's just drawing or making something cute for your sibs out of popsicle sticks - a sense of humour and little gifts from the heart mean a lot .... This too shall pass - nothing stays the same forever - you will feel better --- so hang it there and keep smiling!

[TCP]

No ones in my family understands how bad it is. I have 3 conditions which are not fully recognised and it feels like I have to justify what is wrong with me. My mum is the best as she sees on a daily basis how limited my lifestyle is. I never moan and because of that people presume that I am healthy. I just crack on as best I can and ignore any silliness from others. I've tried to educate but no one listens so I've given up trying.

[puppylove]

I went to a therapist before I was diagnosed with POTS and during one visit my whole family came. It did not go well because we did not know that I have POTS. The consensus was that since I couldn't get out of bed I would have to sleep on a blow up mattress in the living room... Anyways now I'm looking for a therapist who understands POTS. Thank you for all the ideas and for encouraging me! I am waiting for a treatment plan from my cardiologist which will include an exercise regimen, so hopefully that will help too! Thanks again!

[surfgirl14]

Hey puppylove. I see a therapist on a regular basis. She didn't know what pots was but she did research it, after I found out what I had. She specializes in helping people with chronic illnesses and life-threatening illnesses. Also she does family and individual counseling. She is amazing and even went out of her way to leave work to visit me in the hospital. She is basically like my best friend and is constantly there for me. So what I am trying to say is if you can find a good therapist who really cares it will be awesome for you. They are amazing at helping you. It is well worth the money to. I have the same problem with my family even though me and my mom are really close she still doesn't really understand. And I have had a couple sessions with my mom there (was very helpful) it is also good to get that one-on-one with your therapist. where you can share how you really feel and freely express yourself. Hope things get better! Hugs