I recently had a rather large argument with my boyfriend, as he told me that I talk about my Scleroderma and Cyclophosphamide treament too much and it 'tires' him. This made me feel like I winge and moan, when I know don't.
I have recently read another post where someone said they feel like they bore people whilst discussing their illness - we shouldn't be made to feel like that. I am so so angry with my boyfriend (of 4 years) and his reaction to me talking about my illness.
People should respect us for having to go through something so traumatic in the first place!
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AshtonRains
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I hope you're feeling a bit less angry with your boyfriend by now AshtonRains ... it is difficult I know, people think we look OK and, well, they all get tired too, they just don't know that we're not OK, and our kind of tiredness isn't the same as theirs. And it's especially horrible to have something like scleroderma when you're young.
But try and forgive him, as none of us can feel what another is feeling. Some people are good at imagining themselves in others' shoes and how that might feel, others are not. Some may have an unacknowledged need to be cared for themselves (not necessarily because of an illness) and that need makes them unable to put themselves aside and support others.
Also, might he be a little afraid of your illness do you think?
Barb, sounds like you have been dealing for a long time as well. Me 14 years. It's hard for young ones new to these illnesses to adapt. Even with all this technology available to them. They are a generation of "Me's", where I was not. I ad to learn to cope on my own.
I agree with BarbJ - and mostly disagree with SheriFrost. I was recently diagnosed with Scleroderma and Raynauds - both of which I had never heard of. I've known my whole life that something was wrong, but nobody believed me. Now I finally have answers and explanations. I feel stupid when I bundle up in gloves just to open the freezer - but it helps SO much. I know my family doesn't understand - especially because I've been this way forever. I have an amazing husband and children- but I know my extended family talks about me when I'm not there. It's a frustrating problem.. and you have to take care of yourself now to make sure you're able to function later.
As far as the boyfriend goes- maybe he needs to find a support group? My son has epilepsy and there are days where I, as a caregiver, get incredibly frustrated with him and need to blow off some steam. I would guess that your boyfriend may feel the same way, especially because hardly anyone has heard of what we're going through. We're all entitled to our bad days- but it is important to talk through it together and learn from it. If he does those things with you.. then he's a good guy
Ashton, Don't ever be afraid to talk about your condition.... We all feel that we may bore people sometimes but there are times that we have to get it off our chest xxx It is a very deliberating and annoying condition but eventually you will find different ways of dealing with it. Why dont you get some literature from the RSA and ask your boyfriend and his parents to read it so they can get more understanding of the condition xx It is very difficult for someone to understand an illness when they have never experienced one themselves .... and after all we all look so well !!!!! You are going through a lot at such a young age but be strong and know that you are not alone xxxx
Yes, but you can also become boring. You are a big topic to yourself but not to others, especially as there is little that can be done. Men help if there is something they can do about it. If there is tell him what he can do for you. That is what I do with my husband.
I understand how you all feel as I am rarity as a male having been diagnosed with Raynaud’s and Scleroderma and now Addison’s disease. All of this has taken me a long time for me to accept which is an ongoing battle and may have isolated me from everyone around me. I don’t like been centre of attention for all to talk about but I do wish I could talk to someone about how I feel from day to day as each day is different. My wife has been very supportive but I worry that talk of my illness may be getting her down and also making her feel depressed. I think what I am trying to say is that the ones who are around us who love us and care for us can be going through post traumatic stress disorder (PTSD) as well as ourselves.
I believe Sheri speaks the truth as I do believe that your boyfriend is not understanding of the disease and how it affects you. You should never allow anyone to make you feel like you are a burden to him or yourself by discussing your feelings about your Illness. The disease alone is a burden itself, and you need not feel alone... so if you feel that your boyfriend does not care, why not suggest a Scleroderma support group for the two of you to attend so he can get more educated on this disease and how it affects other people as well as yourself. Maybe then he might have a better understanding of how you feel.
I'm not sure how old you are Ashton, but I was 36 when I diagnosed this myself. I was living with my boyfriend of 2 years after a tramtic divorce from a 10yr mariage with an abusive man (I know see he had no idea & neither did I that I had this disease), but what I'm getting at is after we confirmed what I had and he did so much research on this illness, we went to these "treatments" together provided by a physician who said she had a treatment to cure scleraderma...(Bogus), but after watching me get sicker and not being able to help, he started disappearing. I finally just moved in with my mom and within months was on hospice. I've been in nursing homes ever since...that was 1997. Men aren't as helpful if there is nothing that they can accomplish when they try. I let him go...I knew he wouldn't make it through this with me...they gave me 6 mnths...now I know I made the right descision for him & me. His sister & I are back in touch after 14 years. She was so excited to hear I was still alive and I even gave "Mike" a chance to talk via FB. But you MUST decide if your relationship is a healthy one because STRESS is our number 1 enemy. It will make your flares more frequent, so decide if being with this person and worring about what you say or feel about what he says, is worth making you sicker each time you fight.
Try using this place as a sounding board instead of always telling your boyfriend what is wrong. Or talk with someone in your family about how you feel. But it isn't his fault if he get exasperated...this is a hard disease for all of us involved, wether we have it or are just involved with someone who does.
Yes, you are still so emotionally young and it is aweful to have such a major diagnosis at such a young age...hormonally speaking. You do need support, but do not espect to get what you need from a YOUNG MAN too. This is a life-long journey. He is too young to committ to something so permanent at this age. It's not like marriage where you can divorce if you don't get along. Every fight or disagrement will encourage a "flare" and the Stress is ongoing. You will need to decide if your health is more important than a relationship at this stage. It's very hard to have both when he's so young.
I know how hard it is my wife an I just had a baby when I started getting sick. It isn't the easiest thing to go through but if you have a great support system it makes it easier especially through the the days when you just want to do nothing hope you have a better day today and hope you have a good b-day next week. I always try and tell myself there is someone out there worse than I am and it sometimes work. the one thing that helps me is going to work and making my customer happy. I'm sure that doesn't work for everyone it's what helps me
My famliy sometimes tells me that we all die sometime and somedays they are all over me and will not let me do things for myself. I just wish people would understand us and help us and not feel sorry for us.
I am have been with my wife for 7 years now.... She started with Sjogrens Syndrome 5 years ago and it has progressed to both Scleroderma and Sjogrens with the Scleroderma being the primary... I never tire of researching these diseases and discussing new treatments for these nasty disorders with her or her doctors... Sounds to me like you need to find someone that will be able to be there for you and help you through the times when your flare-ups are keeping you in agony
I am a newbie to my Scleroderma diagnosis and this support group. You will never bore folks that come to these sites and local places. They understand. I think most people choose not to understand, though there are folks who stop what they are doing because they want to listen and do care. Those closest to us tend to turn a deaf ear because it gets old to them, in that they do not feel what we feel. If you need a hug, give your signaficant other a hug first. Same with just a touch. Reach out for what you need without saying it. Even if you feel you need to talk. Talk in writing. Keep a daily journal. You may or may not decided to share it with who you feel you need to by the time you unload your burdens and questions. I LOVE giving everything to the Lord, however I often think I need a human touch. That is why I am here. God bless you AshtonRains with strength and patience. Hugs!
There is a great book out there called "Embracing the Wolf" by Joanna Permut. It is about a woman with Lupus, which is a similar disease as Scleroderma, both in the Auto-immune family. Both you and your boyfriend should read it, maybe even together. She talks about not only her side, fear, anger, frustration - but also shows us the spouse of a chronically ill person's point of view. It really helped my partner and I understand each other. Hang in there with each other if you think it is worth fighting for. Remember too that stress can cause flare-ups, so try to talk out your differences and not keep them pent up. Take care of each other and try to keep a good sense of humor (I know this is really hard to do sometimes)
Hi I think although alot of our symptoms are somewhat hidden people don't see or feel what we do. It is hard and sooooo frustrating for us. I think you really should tell your boyfriend especially of 4 years he needs to be more sympathetic to your REAL problems disease"s". Maybe a group to see others or a couples counseling session. I left a bunch of papers and flyers etc... I recieved in the mail on the kitchen counter for about a week or so and since then my husband has I think finally as well seen me for what I have!!!!!! Not a constant nag!!!! I think he read the stuff and was like wow a light bulb moment. I think men are (well mine anyway) are like cavemanish and thinks he can't see too much of what I live with so suck it up like MEN do. But now he read it and I think really has looked at me finally through new eyes. Hope this helps!
for years I felt this way, my poor husband has had to listen to me, but he has always made time to listen. My family outside of my two son;s, does not want to hear about it because they feel it's negative. I feel this is being close minded, and rude. Your boyfriend of 4 years, should not of told you that, even if he felt that way. No one knows where this illnesses will lead us, and trust me I have two friends that have passed away from scleroderma I loved them, and miss them very much. We don't know when we will die and it may not be from scleroderma. What changed for me, is hanging with positive people, and getting involved with things like painting pottery, and just being me. Yes, I have had amputations this year, and also three years ago I had one on my left finger, three digit gone, only stupid people look at them and ask, what happen there, only two people. You are probably a very beautiful person inside and out, don;t ever let anyone make you feel bad because of your illnesses, you can't control what's happening to your body, but you can control how people make you feel and you can let them know how rude comments make you feel, don't feel bad about this. Merry Christmas and Have a healthy happy New Year! Susie
I am still with my boyfriend (of 7 years now) who I wrote the above rant about. I am now 23 years old, nearly 24, and he is 27. We have been through alot together, and I finally found out that he is petrified of my condition. He finds it hard to digest my info sometimes, especially the negatives. However, without him my life would be lonely - he brings me laughter and love and sometimes that's all that keeps me going.
Thank you all for your kind comments even if my reply is slow!!
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Feeling Low
Finally People who are like me
Strange feeling in throat? 
I think i had 'forgotten' what it feels like to have raynauds.
