Chronic illness and your significant other

[Brwneyedchica]

The guy i've been dating for quite a while told me lastnight that he can't deal with my "life style" and with my being ill. I've been sicker this year than I usually am, though if he can't deal, I don't want him around, as it makes it worse for me. He likes to always be on the go, and even when i'm not feeling ill, i'm usually very tired, so I stay in alot. The times that he's wanted to go out and i've been ill, I encouraged him to go without me, and even that didn't seem to make a difference. This is the second long-term relationship i've been in that's pretty much ended due to my limitations. How do those of you in a similar situation deal? I'm very frustrated that this is such an issue. I can deal with my being sick, but i've yet to meet a guy who can.

[MightyMouse]

I'm so fortunate in this regard--I was very ill when Teri and I first met, but undiagnosed. I had given up on medicine and had just relegated myself to my home and accepting that I had chronic fatigue or something like it and life would just be like that. Teri, who works in health care, is the one who helped me get help through the right doctors, and at least get a diagnosis and treatment.

We share many interests, but I never feel pushed to do things that I can't or shouldn't do...in fact, I'm more likely to try things I shouldn't and get told to "No, we're not doing that because you'll feel horrible later and you know it!".

We have our moments over other issues---the typical things: family, money and friends.

Nina

[steph37822]

oops

[Dawg Tired]

When we met my hubby was the one with long-term health care issues due to a head injury. After we had been married a couple years and was the only financial support for the family I started getting sick. He had not applied for SSDI and refused to until I reached the point where I had to quit work. He has been very loving and understanding. Like Teri, he will remind me that I should take things easy and not overdo.

I was a nurse so I was understanding of his problems; maybe he has been so patient and understanding because he has walked a mile in my shoes. Then there is the fact that he is just a really sweet guy!

[Jenn202]

I think if the guy you are with is not willing to educate himsself or understand what you are going through then he is not the right guy. SOmeone should love you for everything you are...good and bad.. There ARE guys like this out there so don't give up!

I started dating my husband right before I became very ill..... So He has seen me at my very worst.... Bedridden etc..... He never left my side the whole time and was one of the people in my life who helped me get a diagnoses.

I think b/c he grew up with a Chronically sick mom it helped him understand Chronic illness......

and the ups and downs of it.

Hang in there.... You will meet a guy one day that sees you for you...and until then take care of yourself and do what makes you the happiest.....That is the most important thing.

[MomtoGiuliana]

We've discussed this before on this forum--so I know this issue is forefront for many of us. Chronic illness is a challenge to all relationships, especially when it causes abrupt or severe limitations to function. It may be, brwneyedchica, that you and your significant other were not compatible in other ways, besides the fact that your physical limitations frustrated him. Perhaps that frustration is what brought out the realization that you were not compatible?

My husband was very caring of me when I was terribly sick and was very patient and understanding. One thing that frustrates me is that he has never taken much interest in understanding the particulars of POTS, even more so when I was quite sick with it. He barely understands that there are times that I can get dehydrated, for example. He also doesn't understand that I still need more rest, or that rest can be more important to me than immediately cleaning the kitchen. It's like we have to (or should) have a running dialogue about my condition. But we don't. I am not good at reminding him or communicating that I feel somewhat bad on a particular day. Now that I am better it is not as much of an issue. I do wonder how things could change if I were to have a bad spell again. He is a person who needs to learn patience, as he is easily angered/frustrated when things don't happen like clockwork. BUT, I did see his love and goodness come out when I was most ill.

A lot of these problems with relationships are culturally driven, I think. Chronic illness is pretty much a stigma in a society that goes, goes, goes around the clock. If you have chronic illness or are in a relationship with someone who does, you have to learn to sometimes slow down, to pay attention to the smaller details of life that you might otherwise not, and you have to accept ebbs and flows, loss of control, and that life does not work according to a plan. These are good lessons and good traits to have, btw, but are anathema to our culture, sadly. Mature, patient and thoughtful potential soul mates are out there, as Nina attests. And these traits can be worked on and learned. Sometimes counseling can help couples that both want to work through it together. There is a person out there for you!

Katherine

[Miriam Poorman-Knox]

Hi sorry cant remember all the letters brwneyedchica?

I have not had this problem,I've been married almost 30 years. And during almost all of it symptomatic.

As a chaplain I have worked with both chronically ill and their partners. I do believe that the way you explained your boyfriend, that you being "with" him is important to him. By that I mean to be seen. A generalization, men are less able to communicate their fears, frustrations, needs, and tend to put a date on it and run. I know many people who have met their significant others at church, support groups, even work.

The important thing is that you ARE DOING THE VERY BEST THAT YOU CAN DO!!!!

Don't let this send you into an autonomic storm. We are good,motivated people, who much like a tea bag can only be used only so much each day no matter how much you conserve. (I use only one for a whole day, my gram did that too). Please lean on us as much as you need. This site is life extending.

I would be lying if I didn't say that this puts a tremendous strain on marriages also. The difference is that we ARE married. My husband and I have an agreement that I don't have to go (first this was intended for camping,backpacking) but that he could go when he wanted. It works.

I see you work full time. When I worked, I worked, then went home and slept till time to get up for work. Thats my life.

Take Care- Hugs and blessings Miriam

[blackwolf]

my hubby and i are going to have our 13th anv. on June 2.

i have pots, he is a manic depressive, with "sad" and stress from an horribly abusive(phy/emotional) father. he sees someone regularly, i only when needed.

do we fight, rarely, mostly over his "granny" driving. mostly in jest.

even things like money don't get us. with everything that has happened over these last few years, it takes alot to "ruffle our feathers".

there is someone out there, where? good question. and good luck,

blackwolf

[India]

Brwneyedchica,

I too have been very lucky in having an understanding partner. However, many years ago, before my diagnosis, he too was having problems coping with my condition--especially my fatigue, needing to rest a lot, and consequently not feeling very sociable. Since then, he has been diagnosed with fibromyalgia--a condition with many of the same symptoms as POTS, especially the fatigue--and I think he finally understood what I had been suffering for years. It's awful that someone has to suffer too to empathize with how I am feeling and his illness has in some ways added to my own strain. But he has been wonderfully supportive as a result.

I'm not the most communicative individual regarding my feelings either--I come from a family whose attitude to illness was to put up, shut up, and carry on. And while this can have its benefits, you can't expect your partner to be a mind reader. And I've found that if I am more communicative about how I am feeling, it has really helped him to understand that this is an ongoing problem, not just an occasional inconvenience, and we have both been able to adjust our lives somewhat.

Self-counseling has also really helped us (too short on cash for a "live" therapist!) and talking to couples who share similar predicaments. We've both read extensively about each other's condition as well.

I guess we have learnt enough to understand that both of us need support and that means sacrificing some things, but that it also means allowing the other to do what he or she wants and alone or with other friends if necessary. Life has to go on and we try to make it as normal as possible.

Bottom line after all this rambling: there are guys out there who will and can cope with your illness. But this may be something that has to be "learned": it doesn't always come ready made off the rack!

[Brwneyedchica]

It frustrates me that I met this guy when I was very sick last June. I was very upfront and open about being sick. I vocalize when i'm not feeling well. I try to stay positive about it, and I try not to complain. I convince him to go out with his friends, when i'm not feeling up to going out. I've done what I can do. I think he's just very confused about what he wants with his life in general, and dealing with me being ill when I don't "look" like it is hard for anyone. He's never really been in a serious relationship, so i can imagine that this must be overwhelming to him. I'm sticking to my guns though, I won't be with someone who doesn't accept ALL of me. Thanks for all of your input! I feel so much better knowing that i'm not alone in this.

[MomtoGiuliana]

You are not alone.

You are young, but it sounds like you have excellent perspective on life. He does sound confused and I suspect needs to do some growing up (don't we all!) It's hard when any relationship ends. You will get through it and be stronger for it.

Katherine

[Jenn202]

Also remember that it is most likely not even YOU or your illness that is the big problem.

The problem seems to lie within him and probably even if he was with the healthiest woman on the planet then he would just have doubts about something else.....

Take care of yourself...the guy who is "ready' will come along!

[kristinp29]

Hi Brwneyedchica,

I feel for you! As difficult as it is, I think it's best that the two of you broke up. If he doesn't have what it takes to be with you, then he's not worth it. The right one will come along and will love you in spite of (or love you even more because of) your illness. For him, it won't matter if you get tired easily or need to stay in a lot--as long as he's with you.

Here's to finding that perfect guy!!

~Kristin

[kristinp29]

Just one more thing....

DON'T SETTLE!!!!

Love,

Kristin

[morgan617]

I was not the healthiest chick in the coop when my hubby and I got married, but up until 3/03, I was able to work all the time. He has to work lots of extra hours and help around the house and never complains, even about the s word, but I don't know if he really , I mean REALLY gets it. We have been married 24 years next month. My doctor called and told him he wants him to come in at my next appt. and he wants to have a sit down with him, because he thinks that even tho Dave seems to understand, he is not there at all emotionally, which is even more isolating for me. I don't know that it will do any good, but at this point I guess I just count my blessings that he still comes home at night. Pretty depressing I know. He is a nice man and a stable partner, just not there on any emotional level. He's a shutter downer. I think he is as supportive as he is capable of being, but sometimes that just doesn't seem like enough. I have begun to think there's no such thing as a non dysfunctional family, and then you add this to the mix.... need I say more? I don't think people should just settle either, but I look at my chronically ill 23 year old son, who's never had a girlfriend and wonder if he'll ever find anyone who understands and can deal with his ailments. I want them, so he can have a normal life. morgan

[violahen]

I can completely relate to your situation brneyedchica. Back when I was in my mid-twenties I met a guy who I thought was the most wonderful man alive. At the time, I too was very sick...the week I met him was the first time I had been out of the hospital in two months....he was not phased by it and very loving and supportive...at first.....then eventually he started to express that he couldn't handle the "health issue"...eventually we broke up....we are both professional musicians and we come across each other once in a while still....seeing him many years later has enabled me to see that it really had very little to do with me...this guy is still searching and confused about what he wants in life.

I DID eventually find the right man....now my husband....we have been married for ten years....the weird thing is how we met....we met at his best friend's FUNERAL...his best friend (and my good friend) died of an undetected heart abnormality at age 26....he died in his sleep suddenly. So Craig and I met under very emotional, health-related circumstances....it was very bizarre. But it didn't scare him away....he was in it for the long haul....

Ironically, however, as my health has deteriorated in the past year or so, Craig has become one of those "bury the head in the sand" type people...he is in denial...it's a survival mechanism....I totally understand it...I always say, "I wouldn't want to be married to me! It's difficult and scary!" It's been tough because when he shuts down, and don't feel the support and don't feel like I can express how I feel. We have now begun seeing a therapist who specializes in helping people with chronic illness....it is really helping....it's still difficult for Craig, but he is trying and so am I...

Also, my doctor, Dr. Grubb, is incredible about talking to me (and him) about this stuff. He has told me that the divorce rate for chronically ill people is about 90%!!!! Well that shocked and scared both of us....

It's true that people with chronic illness have ebbs and flows in life...

one day at a time....patience, and understanding....

Good luck! Yes, DON'T SETTLE! There are good ones out there.

Kristen

[StaceyYount]

Hey,

I got married in August of 1995, in October I got bronchitis and in November I fainted at our front door. I have been ill and mostly bed and home bound ever since. This is our 10 year anniversary this year so I have been thinking a lot on this. My husband is wonderful but it has been very very hard. When I was at my worst we were so far away emotionally it was scary. But we came out of that and out of my worst.The thing is we still love each other and to us that is so special. We still have bad periods but the thing is we love being together and if it means adjusting that to watching a movie holding hands in bed instead of at the theatre we do that. Though it does drive him crazy to always be watching TV in here. If it means he goes off every August for vacation then he goes, if we need to talk (which I admit we don't do enough of regarding how this illness effects or affects our lives) then we do. Anyway I just wanted to let you know that there are good guys out there. And I think it is great that you told him to go off and do things even when you don't feel like it. That is one of the main things I do for Jim he needs to still live but he is so cute because he says I ruined being alone for him. He says it is not as fun as you think to do things because I want to share them with you. He is such a keeper. Anyway I think you have done so well with helping him deal with this and it is up to him. Don't let this make you feel less. We have enough of that to deal with. The good ones are out there and you will find him.

I just wanted to say you are not alone,to all of us we are not alone, you were doing well to help him and you should be proud of yourself for that, the rest of it is up to him.

Stacey :-)

[Guest tearose]

Hi brwneyedchica,

This is one of those topics that is so full of complex issues that can cloud what is really important. It is hard for me to write about.

It is fitting I try today though. Today is what my husband and I call "engagement day". 25 years ago today we decided to spend the rest of our lives together. We will still celebrate our wedding anniversary in September, but this day is also important.

You will find the right person! Please trust me. If you can make friends, you can find your soul mate! Trust your instincts and be yourself. If you can be friends with this person, let them see your strengths and weakness, your best and your worst, then that says a lot. Money will come and go, health will come and go, jobs, houses, will come and go. Your friendship is most important. Don't focus on your health challenges. Your future life partner won't either! There will be times when you seem to wonder if your significant other really "gets it"because they seem so out of touch and there will be times you are so in synchronization that you cant tell where you begin and where they begin. That is the nature of two people in love.

I have said before, I always oscillated at a higher frequency, maybe because of pots, maybe not. Anyway, I am my loves catalyst and he is my rock and foundation. We found a balance. We learned to see the redeeming qualities in what was once maybe thought of as flaws.

You and your forever partner will find each other...believe!

Believe in life! Believe in love! The opposite of birth is death. Life and Love are forever!

warmest regards, tearose

[avais1]

Hello all,

This is a subject we all face. I asked Brett, my fiance, for some tips from the "healthy guy" side of the fence. His ideas are:

1) Find things that you CAN do together, or else you can drift apart

2) Get any underlying psychological issues addressed (for me it is ANXIETY)

3) Couples counseling

4) Refuse to let this condition define you

[BuddyLeesWife]

As the "currently healthy" one in my marriage I have a suggestion. In addition to finding things that we CAN do together, I also found a few things that I do on my own with friends BUT, I set a few ground rules:

1. The activities I do on my own are not exclusive - my husband can join in whenever he wants at whatever level of participation he is up to. I joined a health club (he hasn't visited yet), organized a book club (he has read several or viewed the movie) and have taken up hiking (he helps me train by going on shorter hikes).

2. My friends are female or mixed groups - never just me and the guys. I have many male friends but I think it would be unfair for me lets say to take off hiking for a weekend with another guy while my husband is willing but unable.

3. My activities still leave us with lots of together time - I exercise while he is on his way home from work and I read while he naps or heads to bed early. It's only the hiking that I have to plan for and so far we've worked it out.

After a couple of years of decreased activity from his fatigue, I did start to get resentful when he couldn't do things we had previously. He kept encouraging me to do things on my own but I really do enjoy his company so I resisted and yes, I felt "sorry" for him (my problem not his). For me, this set of activities keeps us involved together but has given me the increased social and physical activity I needed.

We celebrate our 10th anniversary this May

PS - I was previously married to a healthy man but I would pick my current husband even if I knew of his illness when we first met.