Being in a relationship when you're ill

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Being in a relationship when you're ill

Postby Cyborg Ninja » Sun Feb 26, 2012 11:14 pm

How can you be in a romantic relationship when you're chronically or terminally ill? I feel alone, like no one understands or cares about me. My conditions alienate me, and the heartlessness of others alienates me. When I tell someone else about my illness, they don't even care enough to look up what it is, or ask how it affects me. They're just like, "Oh I'm sorry you have that condition." What jerks. I admit that I sometimes wish they could suffer like I do so they would know what it's like. My illnesses are just one of the things that makes me feel different from others, and the tragedies I have experienced in my life are the other things that hurt me deep inside.
DX: SM (idiopathic), Crohn's disease, Graves' disease, gallstones, scoliosis, anemia
Meds: tramadol, Asacol, Cymbalta, Synthroid, fish oil supplement, multivitamin
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Re: Being in a relationship when you're ill

Postby karenb » Mon Feb 27, 2012 1:20 am

You posted a question I've wondered about a lot over the last 4-1/2 years, since I was diagnosed with SM. (I had already been dumped three times because my cane was "too embarassing".) I can find a bit of consolation in three facts: (1) at least I now know that I have a serious condition, (2) nobody laughs at me when I try to dance in a wheelchair, and (3) I can wear some pretty sassy shoes now!

I try to avoid bringing up the tragedies in my life... even though there have been more than a few (an abusive ex-husband among them). The reason I bring up being able to dance now is because I was very awkward until I was in my mid-twenties (having reached 5'-7" tall by the time I was ten), and it's only been since my diagnosis that I have worked up the courage to even try to dance, and I just feel as if I'm flying in the music!

Yes, a lot of folks are alienated by my condition, or their interpretation of it. Heck, I'd be rolling in dough if I had a dime for every classless dolt whose first words to me were "Why are you in a wheelchair?" (They could at least introduce themselves and ask my name first...) I try to console myself by trying to make the most of every day I have... of course, some days are better than others... but I still try to keep going forward.

So I guess the point of my rambling is that I'm trying to make the most of every chance I have... who cares if it seems "normal" or if anyone will love me more or less because of it. I have value as a human being, simply because I am, and not because of any condition I may or may not bring to the table. When I get to feeling down (which is an awful lot of the time), I keep repeating this to myself. It eventually pulls me out of my funk, or at least lulls me to sleep. No, it doesn't change the situation I'm stuck in, but it at least changes my view of the situation in a positive direction, which is enough to get me going again.

I hope this helps... feel free to PM me if you'd like to talk further...

Karen
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Re: Being in a relationship when you're ill

Postby reedy » Mon Feb 27, 2012 8:53 am

It really is difficult, CyborgNinja. My heart goes out to you, with both sympathy and empathy (though we all have different sets of problems).

Its particularly challenging since this spinal problem seems to make the mojo system go on strike. Work-arounds add to the things we have to worry about.
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Re: Being in a relationship when you're ill

Postby gunflint » Mon Feb 27, 2012 4:23 pm

This is a very difficult thread for me to read and for me to answer. It reminds me to be thankful for what I have and for what I have left. One thing though. I think that most "outsiders" are not so much cold hearted and indifferent as they are afraid. They're afraid that when they see someone that is handicapped or in pain or having difficulty that it could be them. It's not right but it is humane nature.
Before my disorder I would see people in wheelchairs or using canes or walkers and I wouldn't think twice about any difficulties that they might be having. Now I make sure to keep an eye on my brothers in arms so to speak because I understand them better. Was I a bad person before? I hope not. I think it was more of a blissful ignorance. And maybe a subconscious feeling that if I ignored them I wouldn't get what they got. I hope this helps a little bit. I know that you're hurting in more ways than one.
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Re: Being in a relationship when you're ill

Postby reedy » Tue Feb 28, 2012 7:18 am

Well said, gunflint.

I've also noticed that if people do engage in asking you how you ended up being ill, their questions often seem to be leading to reasons why it won't happen to them. They are really unable or unwilling to acknowledge that there is a randomness to the world.

When I had my first bout of spinal infection and paralysis I happened to be living in the Netherlands. The cultural norm there is to be very frank (to a degree that can be uncomfortable for an American or Brit which are cultures where different kinds of presentation are expected). Colleagues would say to me, while I was lying there in the hospital, 'oh, its because you worked too hard. You should take more time off'. So it was my fault, even though that's not what the medical evidence said?! In a parallel way, my roomate in the paralysis ward thought God had decided this for her, so she felt at fault though she didn't know why.
Sorry - this is sort of a tangent! But it sort of addresses reasons why some people have a hard time connecting.
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Re: Being in a relationship when you're ill

Postby Syrinx810 » Sat Mar 03, 2012 5:53 pm

This disease takes away so much and causes so much stress that I almost wonder which is worse, the SM or the chronic stress. I would almost bet the stress is far worse since most of us can't be physical enough to combat it.

I read these posts and I am amazed at how kind strangers can be. This group is so important.

I do see a psychologist for get this "chronic depression". I don't feel depressed, but I do feel angry, scared, lonely.

So many things have changed. My relationship with my wife of 18 years. The financial stress from being unable to work. The regret when we have to leave dinner or a movie because sitting up and being out causes such discomfort. I believe everyone deserves someone and better to wait for the right one than to deal with all the wrong ones. I'm glad I was married before I got sick, because it would be so hard to focus on staying healthy and putting all the work into a new relationship. I'm not being funny, but we bought a bird and a hamster. They are great listeners, they will always listen and they never get tired of hearing about the illness. Unlike friends, family, spouses. It's hard on everyone especially people we don't know well.

Its very hard for me to not tell people what's going on in my life, but people have problems of there own and don't want to hear to much about ours. I realize over the last several years, that I complain alot, I'm in a bad mood from pain or lack of sleep. I have to really be conscious of how I am presenting myself. Which is hard because I just want to be me.

I'm hoping as time goes on I can learn how to be more aware of my actions and draw people in rather than away.

Any way I just wanted to let you know I feel where your coming from. Does ASAP have a singles forum? Might not be a bad idea.:) I would guess that everyone here can say something about how these disorders have affected there personal lives. There are alot of people out there, so just take your time and look for the right one.

Take care, tom
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Re: Being in a relationship when you're ill

Postby gunflint » Sat Mar 03, 2012 11:15 pm

A couple of thoughts. The depression is something I don't like to think about. I know most of us suffer from it in one form or another. I try to just put on a good face and move on. Also, I gave up on explaining to people what I have. I usually end up telling my gp more about it than he knows and the lack of SM knowledge I've experienced from neurologists and neurosurgeons is absolutely stunning. Let alone the general public. Besides most people have their own set of problems that are just as serious to them as ours are to us.
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Re: Being in a relationship when you're ill

Postby karenb » Sun Mar 04, 2012 4:35 am

Hi gunflint,

Well put. I will try to keep that thought in the back of my mind as I go forward.

I had a great experience Friday - I went to one of my MDs for an annual check-up, and she actually listened to what i was going through, and was sympathetic (even though SM is far from her field of expertise). It was really nice to be treated as a whole human being.

Karen
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Re: Being in a relationship when you're ill

Postby Pearson » Mon Mar 19, 2012 3:20 pm

The key is finding the right person for you! I was dx'ed back in 2007 and had surgery in January of 2008. I still suffer from uncontrollable pain and other symptoms such as muscle spasms, dropping things and muscle weakness. I found someone who was willing to accept me for me (including the condition) we just got married after dating for about 16 months back earlier this month. She is a wonderful woman and accepted me for me. You just need top find the right person and everything else doesn't matter!
4/26/96 - Full right Frontal Crainotomy - Colloid Cyst Removal
9/11/07 dx with ACM1 ~ decompressed 1/21/08
9/11/07 dx with SM C-6 ~ T-1
1/21/08 - CM Decompression
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Re: Being in a relationship when you're ill

Postby NextNyc » Mon Mar 19, 2012 7:16 pm

Who are the people who post on here? People with very mild Chiari cases or wealthy people who can afford all the best insurance , MDs, surgeons, traveling associated with these things etc without a 2nd thought? All I have to say is if you have ACM/SM and aren't totally overwhelmed by pain ,medical costs, and then the everyday things on top of that , consider yourself very very lucky.

Everyone is imperfect, but in this case are we talking about the same ACM/SM that causes severe neck shoulder pain, vertigo, migraines and doesn't have consistent surgical results here? Or has a new, more reliable surgery been invented?

Because my experience and the people I've met in real life with chronic pain and chronic migraines from various things from ACM to Fibro usually are having trouble getting through just getting though a day.
Syrinx C4 C6 with tail to T1; ACM 3 mm herniation. Symptoms=excruciating pain in arms and worse pain in shoulders & neck pain, the neck at min feels pressure filled and aches.Any position besides a reclined in Lazy Boy makes it worse
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Re: Being in a relationship when you're ill

Postby Pearson » Tue Mar 20, 2012 9:55 am

NextNyc wrote:Who are the people who post on here? People with very mild Chiari cases or wealthy people who can afford all the best insurance , MDs, surgeons, traveling associated with these things etc without a 2nd thought? All I have to say is if you have ACM/SM and aren't totally overwhelmed by pain ,medical costs, and then the everyday things on top of that , consider yourself very very lucky.

Everyone is imperfect, but in this case are we talking about the same ACM/SM that causes severe neck shoulder pain, vertigo, migraines and doesn't have consistent surgical results here? Or has a new, more reliable surgery been invented?

Because my experience and the people I've met in real life with chronic pain and chronic migraines from various things from ACM to Fibro usually are having trouble getting through just getting though a day.


All of the above. plus severe thoracic back pain, I also consider myself very lucky despite my issues. Having a positive attitude is very important. I have my darker days where I dwell on things but they are few and far between.
4/26/96 - Full right Frontal Crainotomy - Colloid Cyst Removal
9/11/07 dx with ACM1 ~ decompressed 1/21/08
9/11/07 dx with SM C-6 ~ T-1
1/21/08 - CM Decompression
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Re: Being in a relationship when you're ill

Postby karenb » Wed Mar 21, 2012 2:30 am

NextNyc wrote:Who are the people who post on here? People with very mild Chiari cases or wealthy people who can afford all the best insurance , MDs, surgeons, traveling associated with these things etc without a 2nd thought? All I have to say is if you have ACM/SM and aren't totally overwhelmed by pain ,medical costs, and then the everyday things on top of that, consider yourself very very lucky.

Everyone is imperfect, but in this case are we talking about the same ACM/SM that causes severe neck shoulder pain, vertigo, migraines and doesn't have consistent surgical results here? Or has a new, more reliable surgery been invented?

Because my experience and the people I've met in real life with chronic pain and chronic migraines from various things from ACM to Fibro usually are having trouble getting through just getting though a day.


I post here because I have idiopathic SM without Chiari, the result of which is constant leg & back pain, paralyzed internal organs, is inoperable, and is the reason I'm in a wheelchair. I am not wealthy - I am on Medicare & Social Security. Each day is different - some days, I can barely get out of bed, other days it's all I can do to wash the dishes or a load of clothes - many days, I'm too exhausted to even be overwhelmed - so I just try to keep my head above water.

I thought we were all welcome on this board, even though we have different forms and versions of SM/CM. Personally, I try to live each day as fully as I can, and still hope to find someone to share my life with me, limited though it my be. I'm sorry you interpret having that hope as not being sick enough to post here.

Karen
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Re: Being in a relationship when you're ill

Postby weevab » Thu Mar 22, 2012 12:25 am

I count myself as extremely lucky that I've met someone who is accepting of my condition, how it impacts my life and the potential downsides in the future. I'm very proud to say we're getting married in a bit over week.
Ben - http://ooh-thathurts.blogspot.com
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Re: Being in a relationship when you're ill

Postby karenb » Thu Mar 22, 2012 9:19 am

Congratulations!!!!

Karen
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Re: Being in a relationship when you're ill

Postby toport20 » Thu Mar 22, 2012 4:23 pm

Wow Cyborg,

You hit the nail on the head. I have been going through so much emotional turmoil, from the doctors that don't know what it is, from not feeling like going to the park, to my messy house, etc. I had been living with my bf 10 plus years and we were engaged. He became frustrated and thinks I am not trying enough to do things and I would feel better if I got up and moved around.

So he moved out about 2 years ago, leaving me with a house and 2 dogs. It was a double whammy to my already depressing physical problems. I know he felt like I "used" him, to help clean, most of the cooking and always going to the store.

Now that things have progressed, and there is "proof" of my illness he has become more understanding. He is also having physical problems too, so I know he relates to me more, although he is alot more mobile than me. Anyway, we are working on getting back together, I feel very lucky for that. It still doesn't erase the pain of feeling guilty or trying to do more than I should. Thanks for the post, I do not feel so alone and relate to everyone's problems. Wishing you the best!
Pre OP:
SM 3mm C3-L1
Tonsillar Herniation 5mm due to TCS
TCS Surgery TCI 6-6-08
ICT 6-7-08

Post OP: 2011-MRI
CM 8mm
SM C2-C6 9mm

PFD done in May 2012
Arachnoiditis found
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