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help for the supportive significant other

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#1 supportiveboyfriend



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Posted 27 August 2009 - 05:50 PM

I've only been dating my girlfriend for just shy of 4 months, and today she tells me she has scleroderma. I do love her, but I don't know exactly what to expect. I told her I would stay with her no matter what but she told me to sincerely consider that, considering I'm 10 years her minor w/ no kids and she has 4 of her own. She told me herself what she is expecting, however it didn't phase me. However I have read up on it quite a bit since then and read a lot of the surviving family's stories and it is a lot more then I expected, and killed me to think that could happen to her, however I could never leave her alone with it. I would like some advice from others with SD, and also from those who are married/dating people with SD. It would help a lot. Thank you.

#2 Amanda Thorpe

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Posted 28 August 2009 - 03:30 AM

Hello Suportiveboyfriend

Welcome to the forum although I am sorry it's because someone you love has scleroderma.

The decision you have to make isn't really one that I can contribute to and there are a few reasons for this. Firstly only you know what you feel for your girlfriend and how committed you actually are after the short space of 4 months. In addition no one knows how your girlfriend's illness will progress, how ill she may or may not become, how disabled she may or may not become, how much of a carer you may or may not become as a result. Some people with scleroderma continue to live what would be considered a relatively normal live and some people don't, their whole life changes.

I appreciate this answer may not be the one you were hoping for and maybe others will chime in with something different. For myself I hope you make what you consider to be the right decision I just can't advise you either way.

Take care.
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#3 Jeannie McClelland

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Posted 28 August 2009 - 04:00 AM

Hi Boyfriend,

Amanda's right - that's a decision you can only make for yourself.

There is so much to consider in a relationship and health must be a part of it, but there are other things as well.

I'm older than my husband by 5 years and already had 2 children when we met. (We now have 4.) I was as healthy as a horse and had a pretty decent job. We waited 2 years to marry so we had a good long time for all of us to get to know each other and an idea of how we were going to meld as a family.

My youngest daughter got married this summer. She and my son-in-law had also had several years to get to know each other. They are contemporaries in age and neither has children. I was honored to officiate at their wedding and I'm going to share a part of it with you.

We think of their love as new and their wedding as the beginning of a new family’s life and, in a way, it is.

However, how one loves and what a couple envisions as a good marriage and as the perfect family life has been influenced by all they have seen and known. It’s a distillation of all that we who love them have demonstrated in our own loves and relationships.

And so today, we share in their vows. We pledge to love and honor them, to give them our understanding and our support. We promise to accept their friends and family as our own and to respect their decisions. We gratefully receive their love. We do this not from obligation, but because of love, freely given.

Would you be ready and able to be a father to her children and help them cope with their mother's illness? Could you take on her role as mother, homemaker, perhaps be there for her parents, brothers and sisters? Can you take on the simple time requirement of helping her out with all the daily things she does? Can you put up with her emotional mood changes caused by a change in her health or the anger most of us feel when we can't do something that used to be a piece of cake? Could you handle being the sole provider in the family? Are you prepared for the inevitable "what were you thinking of?!" from your family and friends when they realize what you've taken on?

My hubby, bless his heart, does as much as he can to help me out. But there are things we've had to give up and other things have needed some compromise between what we want and what we can actually manage. Just a for instance, no more air-conditioned movie theaters and restaurants. No more long mountain hikes. The housekeeping has slipped. We've given up space in our bedroom for my noisy O2 concentrator. He's young enough and fit enough to be wanting to do a lot more than I can manage, even on a good day, and many of the things we planned on doing together just aren't possible. Our money situation is different too and not for the better. Illness is always expensive.

My advice to you, as a mother, and also as a systemic sclerosis patient, is to give yourselves more time. I'm sure I've just given you a pretty negative picture. That's kind of what mothers do - provide a reality check. Just don't, in the early flush of love, make a commitment that you are not sure you can keep. Allowing your girlfriend and her children to come to depend on you and then having to walk away would be the worst thing you could do, in my book.

Just remember that none of us here are counselors of any sort. We're just ordinary people who are willing to share our experiences and viewpoints. You have to, you must, make your own decisions.

I wish you all the best.
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#4 Sweet


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Posted 28 August 2009 - 04:05 AM

I'm so glad you posted. You sound like a terrific person. Some times reading stories can be a bit daunting, because a lot of them are extreme. I've had scleroderma for 9 years. I have to say I've progressed a little but not a lot. You're girlfriend can live to be a ripe old age, just like anyone else. Every situation is different however, so you just have to wait and see how it pans out.

I'm assuming she's seeing a Rheumatologist? If not, she needs to. If you need help finding one that specializes in Scleroderma let us know.

In the mean time, take a deep breath, take one day at a time and here is a link to emotional adjustment that may help you and your girlfriend.
Warm and gentle hugs,

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#5 janey


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Posted 31 August 2009 - 04:24 AM

Dear Supportive Boyfriend,
Welcome Darin! You sound like a young man with a very big heart! You're girlfriend is quite lucky to have you.

Amanda, Jeannie and Sweet have given you some great advice that I totally support. So I know you have a lot to think about. We do have a caregiver support page that you might check into. There are caregiver stories and resources that might help you out. My husband of 35 years is my caregiver and he's my rock. We have discussed his needs and struggles many times because this disease has changed his life as much as it has changed mine - but he NEVER complains. I would have to admit that his biggest challenge is deciding how much support I need. I've always been very independent and have never had to depend on others for much of anything. This disease changed that so it's been a struggle for me to accept help and for him knowing when to provide it. Now that I'm into year 6 we've worked it out. We live relatively normal lives, we each still have our independence, but I know that he is always there when I need him. It's been hard on him, but for him it was a no brainer. We had been married 29 years when I was diagnosed. Each situation is different, so please think about it, discuss it with you girlfriend.

Right now, you need to make sure that your girlfriend is getting the professional care that she needs. Early diagnosis and treatment is so important.

You have found a great place for support for both you and your girlfriend, so please take advantage of us. We're here for you both.

Big hugs to you both,
Janey Willis
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#6 debonair susie

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Posted 31 August 2009 - 10:19 AM

Hi Supportive boyfriend.

You have found an excellent site to get information and to also voice your thoughts, feelings and concerns regarding Scleroderma.

The ladies who replied to your thread have been very candid, just as I intend to be.

As has been mentioned, none of us can be sure how our scleroderma will advance, or if it will.
However, please rest assured, if your girlfriend is seeing a rheumatologist, that each of them is working on treatment to help her symptoms. If not, it would be good of you to mention to her that she get set up with a rheumatologist and see about treatment.

It's important for each of us to be conscientious about our treatment and be our own advocate, with regard to making the best decisions for our better health.

Your girlfriend is quite fortunate that you are an individual who will be in her corner. Having taken this step to finding out about scleroderma makes me believe that you will likely be able to offer her the emotional support she needs.

Thank you for posting here!
Special Hugs,

Susie Kraft
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#7 smac0719


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Posted 31 August 2009 - 02:12 PM


You were brave to post and braver to want to be there for your girlfriend. Many men would have "run" before doing any research or even attempting to get a better grasp on this disease we share. You were given great advice so the only thing I will add is even if you decide not to pursue the boyfriend/girfriend relationship, I bet you'd make a great friend. Your girlfriend will need a lot of support as she works her way through this new phase in her life. Good luck!
I may have Scleroderma, but Scleroderma doesn't have me!