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Who do you tell you're "sick" & how do you pick them

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#1 smurfette


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Posted 16 July 2008 - 04:34 PM

I was diagnosed for a good ten years or so before I told my sister and her husband, my sister-in - law or my in laws. I have never told my parents (they are in their eighties and have never handled anything well - we have a rather warped relationship. I am the older of two girls, my parents are both the youngest children in their families and I am more the parent and they are my children in many situations). The majority of my friends do not know. I just go to ground when unwell and lay low. I value my privacy and fortunately my outward appearance looks pretty much like nothing is wrong. My CREST has attacked my esophagus and intestines, I have Raynaud's and fibro, a hiatial hernia and a few other goodies but I manage to look ok when I finally go out or when I am at work so unless you can read my mind or see the red lines on my skin under my makeup, you won't know anything is wrong. I take a lot of meds and pop a lot of OTC antacids and just fake it.
It is important for me to just live as normally as possible and not have people treat me as if I have a problem or a disease. I guess that is the reason I have told so few people. I do not want to be the focus of attention because of my "thing". My parents are the kind of people that really tell you how they feel - loud and in detail when people ask - any people - and I guess my reaction is the direct opposite. Maybe neither one is very rational! However I would rather keep things close to the vest and just smile and say I am fine than go into detail about reflux, gastro paresis, sore trigger points, etc. Or for that matter say I am unwell. Until or unless I really cannot avoid discussing it - like I am hospitalized or am seriously disabled to the point of not getting around I just don't - or can't -talk about it.
My husband and some of the people I have told think that I am making things harder on myself. I cannot ask for help or if I am unwell I don't use that as an explanation for not doing something. I don't share with people who do care. I push it all down. He says that I am creating more stress for myself. I say out of discussion out of my face. I have to deal with it enough - everytime I eat, trying to sleep, constant reflux. I don't need to discuss it.
Who do you tell? Do you tell? If so, do you feel better when you do? Are there those you just don't tell? When did you tell? This is not an insurance or job preservation issue - it is a personal one. How do people treat you once they know?
Thank you in advance for sharing,

Chocolate, It isn't just for breakfast anymore!

#2 YFChoice


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Posted 16 July 2008 - 05:46 PM

Smurfette........I have to agree with your husband and friends. I've had SD for 26 years. My wife has had it for 15. WE met at a SD convention, got married and will celebrate 10 years next month. Between us, we have 5 boys, ages 17-26. For a long time, we did not let on to our kids when we were going thru the tough times. We didn't want to see them worry. The result was that they were not around when we could have really used their help......our own fault for appearing so strong on the outside. So, we finally sat them down and had a heart to heart talk with them. It was tough. But, each one of 'em now not only will help if we ask them to, they will actually ask us how are we doing and is there anything they can do for us. No pity party......just genuine caring.

I work as a massage therapist. My wife is a scrapbook designer and teacher. We let our really good clients know what we have. The massage industry is a tough group and it is a challenge to keep clients. I treat my clients as royalty. They know my problems. If I have to cancel, they understand. They don't want to lose me and by keeping them close, I won't lose them. We don't tell everyone obviously, only those who we have a lot of contact and interaction with.

It sounds to me like you've lost some humor in life. I realize that this is a tough disease. Nothing about it is funny. But life can be more fun, even with SD, if you can put a humorous spin on it....to lighten up a little. When I lost some of my hair during chemo, it grew back a frosted color. My hair stylist said I was really lucky and did I know how much some of her female clients paid to have that frosted look? She survived cancer so she was being funny. So, when someone would ask me how much it cost for me to have that look, I would tell them thousands of dollars and all of my meals for 3 days.

I sat across from an 8 year old little girl once during one of my chemo treatments. She had me and the nurses just rolling cause she was cracking jokes and just making a dark process just a little lighter. I knew that if she could see her lot in life in a different vein, so could I.

Give people a chance. You just might be surprised. IT'S A LOT EASIER TO NOT ASK FOR HELP IF YOU KNOW THAT HELP IS THERE IF YOU ASK. If some of them get too dark and morbid, just put 'em in their place. Tell 'em to save the eulogies for when you're gone and you don't have to listen to 'em. It does work. I did it.
~ You have to think anyway.....you might as well think big

#3 Shelley Ensz

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Posted 16 July 2008 - 05:57 PM

Hi Smurfette,

That's a very good question. I don't think I have an overall answer for it. I waffle on the subject myself, preferring not to discuss my own health issues with most people. Sometimes, though, I feel the need to discuss some aspect of it, usually to get it off my chest so that I can "get over it" quickly and regain my focus on others, instead of myself. And sometimes it is to relate to them, to let them know I understand fairly well what they might be going through.

It is so easy to just dwell on symptoms/treatments though and to lose our focus on more productive things like family or hobbies or work. The question probably is, what good is the discussion going to do? If it's a new symptom, I need to be taking that concern to my doctor, first of all.

If it's an "old" symptom (which most of ours usually are) then I try to ask myself why I am dwelling on it or wanting to discuss it. Sometimes it is to avoid doing something else (a form of procrastination but I can blame it on my health). I ask myself why I feel the need to be self-focused instead of other-focused. Sometimes a symptom just needs to be acknowledged so our friends and family know why we are not up to par.

So my husband and I have it down pat! I'll say, for example, that this that or the other thing is acting up, if it is being particularly bothersome (more than usual). And he'll simply say, "I'm sorry to hear that." If appropriate, he'll add, "Is there anything I can do to help?" I'll answer him honestly, such as, yes, please run this errand while I take a nap; or please turn the heat up; or whatever. Then, I'm not "stuffing" the symptom, he is aware of it, we are taking care of it together as best we can, but neither of us are dwelling on it, or giving it more time or attention that it needs, either.

I think it's very healthy to have friends or acquaintances with whom we share interests other than just our health. But that also becomes difficult to master, when we have so many symptoms to consider and issues to balance. So our close friends all generally know both of our health issues -- to the point where it impacts what we can or cannot do with them. Too much more than that can be overkill, and not healthy for the overall relationship (because, what can they do about it?!).

At one point, I was mostly bedridden for a year. So then I made flexible plans with my friends -- such as, plan A was to meet at our favorite restaurant; plan B, they would pick me up and take me there (I couldn't drive for a long time); plan C was they would come to my place and I'd fix something; plan D was they would bring take-out over and I would pay and we'd eat in the kitchen; plan E was they'd bring take-out and serve it to me in bed; plan F was we'd take a rain check on the whole thing. Then, I'd do the most I could possibly manage that day -- and focus it on what I could do, enjoying our time to the max, no matter what plan had to be implemented.

Then, they simply needed to know that I was very sick but recovering (a positive spin on it!) and looking forward to hearing all their stories. Everyone was so flexible and happy to accommodate; what mattered first was that I accepted my situation realistically and still made plans to include them in my life. I couldn't have done that if I pretended to be entirely healthy.

Perhaps you could give some of your friends (and some family) a break, and let them know just enough to see what you could do together, to accommodate your current health but still build a friendship? Saying that you can't ask for help is a danger sign; learning to be assertive enough to adjust our environment to enable the maximum pleasure in our life is important -- even though it is difficult and often requires developing some new communication skills. But it also gives those who love us a practical way to help, too. Provided we express things "straight up" and not sideways or by guilt-tripping them, this can truly help build relationships over the long haul.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#4 Peggy


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Posted 17 July 2008 - 05:57 AM

By doing it the way you are by not telling anyone you have avoided the statement "but you look so good" or "you don't look sick". All I say then is that I wish that I feel as good as you say I do. I live in a small town and when it got around town (as things do in small towns) I know because people didn't have a clue what scleroderma was that they had me dead and buried. I have lost a considerable amount of weight and that only adds fuel to the fire on just how sick I am. Also because I'm not out much there is talk on how sick I must be. It's only because I have no energy and I am so fatigued and also the pain in my legs makes it hard for doing a great deal.

Only you can determine on how you want to proceed in this. If you think you could benefit from people knowing and then offering their support then that can be a good thing. If you are a terribly private person who doesn't want anyone to know then that's the way you should go about it. I do agree though that when people do know then you can ask people for help when you are in need.

Warm hugs,


#5 Gidget


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Posted 18 July 2008 - 04:56 AM

I don't feel all that private about my Sclero. I feel the more people that know the better as the disease is relatively unknown. I mean we really don't have much public awareness about sclero unless you "know someone who has it" or had it.

Close family members that I thought would be real supportive have not been. Acquaintances and co-workers who I thought wouldn't have much cared have been great! Friends have been 50/50 -- so you never much know who will react how.

For me, conversations with those that know does not really focus that much on sclero or at least I try to make sure that it doesn't as who wants to hear about me, me, me all the time. But it is great to have someone say "you look great". So, for me spreading the word is more about telling people about the disease and along the way, I find out friends and family may have Lupus or MS or something equally crummy -- and I never knew!

good luck -- I say tell who ever you want/whenever you want but don't be surprised if the people you thought would be the least interested end up being the most supportive. Regards, Gidget

#6 CraigR


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Posted 18 July 2008 - 11:02 AM

I agree with others that you are making it harder by keeping it so private. Your world is thus a bit out of kilter with reality. I tell people when it becomes an issue. It's usually like this: "I have an autoimmune disease called scleroderma, which is similar to lupus" (more people have heard of lupus) and might go into some of the symptoms that might be relevant (like that I won't be able to sprint up the beach with peripheral neuropathy and pulmonary hypertension). Most people are understanding, and drop it at that. This is fine with me, as I want their understanding, but don't feel a need for their support (also being a rather private person). But again - only as far as it matters to the situation - such as letting people know that you have a hearing problem (which I have...). The less drama, the better. I've never run into anyone who is annoyingly curious.

I have some balancing problems, so I occasionally walk with a cane. Sometimes I use my cane even at times when it isn't really necessary. It seems to do a good job of informing people that I've got some trouble. (I have no idea how you might apply this...).

When dealing with people who are as you describe your parents to be, there is little you can do but let then know the situation, then inform them when you are limited by your symptoms ("I won't be able to make it - I'm in a lot of pain due to a flare up"). They will never relinquish center stage for their drama.


#7 truman


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Posted 19 July 2008 - 08:49 AM


I am an extremely private person, in addition I was stunned to learn I had such an illness and for some reason quite embarrassed by it. Just the idea that it was so rare and the thought of having to explain what it was without bursting into tears. The only persons who knew were my oldest son and my best friend. I too have CREST and by looking at me, one would never know there was a problem besides maybe growing older. When it all started to hit the fan, the disability application, hospitalization, then I knew questions were going to be asked and it was "time to come out". First was with my younger son, who didn't have a clue at age 27. I thought I could pass it over on him, but things just got out of hand and it became harder and harder to do. Second was having to tell HR to receive proper applications for benefits due me, but contrary to what HR is supposed to keep confidential, they tell their "friends" in the company. I could tell by the polite inquiries about my health. My circle of friends were last, and they have been my life line. I like not having to hide anymore. I like that if I say I'm tired or not feeling well, no one is pressuring me anymore. Those I do tell, as with my brothers, would rather not absorb what I saying. They can't handle it, they move emotionally away.

Do you tell? When the time and attitude is right, you'll know who and when to tell. It's all about YOU being comfortable, not the outside world.


It is what it is...........

#8 Purr


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Posted 19 July 2008 - 12:04 PM

Hello Smurfette,

I'm a private person about a lot of things, but not scleroderma. It was obvious to everyone that something was wrong with me when I was diagnosed because I looked anorexic and was very weak. I had no problem telling anyone who asked, what was wrong. I'm like Gidget. More people need to be aware of autoimmune diseases and what they can do and be able to talk to people who have the diseases. The majority of the people I've spoken to know a little about lupus and raynauds, but have never heard of scleroderma or polymyositis. I don't push the information on them. It's not hard to tell when they are incomfortable. My family is very supportive because my sister had lupus and they know what she went through. I also have 3 or 4 cousins that have autoimmune diseases.

Nobody treats me any differently now than they did before. Well, except maybe when I need help climbing stairs or getting out of a chair or booth. Usually I do that on my own. I've gained about all of my weight back, so I look like the old me again (Don't know if that's good or bad!! :lol: ).

Whether or not you tell people is a personal choice. You should do what makes you comfortable. But, again like Gidget, I think you'd be suprised at the people who would turn out to be supportive.

Take care,
Love makes the world go around!

#9 smac0719


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Posted 19 July 2008 - 04:06 PM

It was hard for me not to tell my family and "inner circle". I suffered for a little over 2 years searching for a diagnosis. They were there with me while I went through all the changes and challenges this disease takes you through. For the most part, my family and friends have been supportive. However, the form of thinking that many people have which says you have to look sick to be sick does make some people insensitive to this disease and other diseases that people suffer from. It does hurt when you feel that from the people who are supposed to care the most about you. I also hear "but you look good" more times than I care to. To look at me (on most days), one would not know I'm sick. I had to educate those who would say that and explain to them that saying that minimizes my illness and that it's also inappropriate.

I am more of a private person so I don't tell everyone about my illness or my lows. However, those closest to me can tell when I'm not feeling the best. I find the people that I come in contact with in the medical profession are the worst. I get such pathetic looks and comments when they review my charts or I have to tell them I have scleroderma. Sensitivity training should be required yearly for those who work with patients.

My hardest part is talking to people at work. I don't reveal much there as up until the muscle weakness began, I have been able to make it through a days work. I might not get anything else done the rest of the day or over the weekend, but I have been able to remain employed fulltime. I have missed very little time so the majority don't know that I'm ill.

I did find that I had to learn to let people help me. I also had to find my comfort level in talking about this disease. It affects me in some form or fashion daily, but I don't always talk about it. I think it's because I don't want to come accross as a complainer or an attention seeker.

When you are ready, try to open up to those you love and those who support and care about you. There may be some who you think will be there for you who won't and some you least expect who will.

As we all know, we do need support or we would not be here on this site. Don't deny your illness or those who want to help you. Try to accept it for what it is and make the best of it (i know, easier said than done). Through it all, I try to laugh daily. It's a simple task and it makes the world of difference stresswise.

Peace and blessings!
I may have Scleroderma, but Scleroderma doesn't have me!

#10 lizzie


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Posted 19 July 2008 - 11:01 PM

Hi Smurfette, I tell everyone who I feel it is appropriate to tell, and go into varying levels of detail:
My Husband gets told everything (even if he doesn't want to hear it) and certainly knows only too well when I am feeling unwell or worried!
Cose friends, know exactly how I am , what tests I have been for etc and know that SC is a potentially progressive and even fatal disease. I need them to know this because a) I would want to know if my friend had a serious illness - I would want to support them practically and emotionally and would feel betrayed if they didn't tell me B) I need their support.
I have 2 sons in their early 20's- they know that I have SSc and what the potential consequences are - I gave them written information about it as well. However, I don't tend to tell them when I am feeling unwell or am worried about something. I have my husband and friends for support. I would tell them though if I developed new problems such as PH.
My father is 82 and lives in Portugal- he knows I have a potentially serious illness that effects the circulation in my hands and so when I go to visit I need to keep warm. He knows that I go into hospital every few weeks for treatment for it but I haven't elaborated any further. I certainly don't tell him when I feel unwell or am worried. He is hundreds of miles away, has health problems of his own and there is nothing he can do about it. However, as with my sons , I would tell him if things became more serious and there was a possibility that I might die.
I work in a faculty of medicine - my employers know that I have SSc, they needed to know because I go into hospital every 8-12 weeks for Iloprost.
My work colleagues also know that I have SSc, although their level of knowledge about it is is variable. Some have made a special effort to read up about it. Again they neede to know because would wonder why I was disappearing for a week every few weeks. It was also necessary as they often like to work with the window open even in winter. I needed to explain why I sometimes might need it closing, otherwise they might thing I was just being difficult and selfish! They will sometimes say I am looking well- I take that as a compliment, I don't feel that that they are minimising my illness. Equally they may say I look tired - that upsets me far more, particualrly when I'm not feeling tired!
Neighbours and casual aquaintances, if they ask how I am , are usually told that I have some wierd autoimmune disease but am otherwise Ok. They only get more detail if they specifically ask.

#11 razz


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Posted 20 July 2008 - 03:03 AM


Who you tell and how you tell is a personal and individual decision. In the beginning of my SD I didn't know what to expect so I didn't know what to tell anyone. I figured as time went on, I'd know more about my situation, no need to worry everyone unnecessarily. As time progressed, I found out I had the aggressive form and was rapidly decling. I couldn't utter two words to explain my condition without breaking down and crying. My mom knew and told my oldest brother. I told my sisters who were very supportive. My youngest brother came over one day and was very upset that I hadn't told him. Even stopped talking to me. To this day, he still holds a grudge. If strangers ask in a sincere manner what do I have, I can tell them now because it's been 10 years and I'm accustomed to the "new me".

I agree that the people you would think would help you, don't, and the ones you least expect, do. It's amazing how we learn who our true friends are. I'm still independent and try to do things on my own. If anyone asks me if I need help, I always accept it, because I can't do everything myself.

Smurf, I'm sure you'll know what to do when the time presents itself.

Warm hugs to you!


Live well, Laugh often, Love much

#12 truman


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Posted 20 July 2008 - 09:52 AM

The main theme here is you'd be surprised! Those you expected to be compassionate and help don't, and those you never dreamed possible, are. Truly amazing. And Razz, I agree; not one to ever ask for help, I quickly say yes to most invitations. I still feel funny about people having to grocery shop for me, because they never take the money and that bothers me, so I don't ask anymore. I do accept rides, carrying groceries into the house, etc.

It is what it is...........

#13 MicheleM


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Posted 20 July 2008 - 12:14 PM

I understand this dilema. I had a difficult time in the early years with this disease - even my dr didn't want to use the word sclero. I come from a family of handicapped people who offer no shelter from the storm. If they can deal with their issues, they figure I can handle my own and that has been really hard on me. I care about everyone around me and it's hard when they don't respond and I think that's what stops many of us from speaking out ... the fear of rejection because we are so different along with the disease not being well understood like RA or Lupus which have had more "press". I have learned to use the word "can't" even though it wasn't in my vocabulary ... kind of like drugs (so many of us never even took tylenol!)

I have also learned to pick and choose who I will tell. I want those who I do tell to understand yet not feel sorry for me. Pity is the last thing I want. But, I do want those closest to me to know what I'm experiencing because it is such a heavy burden to bear alone. That being said, my family pretty much disregards me including my husband who says he wants to help, but never seems to be there when I need him or he tries to fix something he has no understanding of what it is. It can be so frustrating. I had to tell the people I work with (took me a while though) because we work as a team & if I'm having an off day they need to know so they can compensate. Now it's no big deal ... after almost 2 years ... but I am accepted for who I am and my limitations. So by telling them I ended up getting supported.

So I think it's a mixed bag and like others who have responded it really is a personal choice we have to make moment by moment, day by day, situation by situation. Just because we say we have sclero doesn't mean sclero has us! Maybe that will help you!
Soft hugs your way,


#14 Donna V

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Posted 27 July 2008 - 04:17 PM

I'm sorry I missed this chat! I work during open chatroom times...yes, I'm still trying to work with the "trifecta" of autoimmune diseases, Mixed Connective Tissue Disease, but it's getting really hard to be productive and I've been counting the minutes until my shift is over lately. I worry a lot about the reduction in income once I get disability, how will I manage, blah, blah, blah and feel my intestines knotting up.

My best friend at work knows about the MCTD and is incredibly helpful, with suggestions about how to be okay with forgetting to bring my medicine (by keeping extra in my drawer, duh...why couldn't I think of that?).

I told my brother and sisters, expected none of them to be particularly supportive and wasn't TOO disappointed when they let me down. (Silly me. I had actually hoped they would become a little less helpless and lean a little less on me for support!) Where am I going with this? I'm not sure exactly, except to say that I wish I had a significant other, someone really close for physical and emotional support. I don't, but feel you all can relate pretty well to what I've posted so far. When I don't know whether I trust someone enough to tell them, I keep my mouth shut and come back to this forum and read your clever and often insightful posts.

Thanks for you all!

#15 albino joe

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Posted 27 July 2008 - 06:48 PM

Hi Donna,

I'm new to this site but I just wanted to say something to you. What it is I want to say?? My wife is bedridden and we have an 11 yr old & an 8 yr old and my wife lives with her mother a few miles away because she needs 24/7 care. Reading your story hit me that maybe my just being there for my wife to talk to each day helps her. I feel so helpless. It is one day at a time in our house. Bless you.


#16 truman


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Posted 27 July 2008 - 07:17 PM


Wishing for a significant other whether in sickness or health is a natural, someone to spend the rest of your life with and share ideas, events, etc. After almost 20 years of friendship with someone, he was there when it all fell apart but since my hospitalization in June, has distanced himself and we see each other here and there. I think it was just all too much on him; the responsibility, the caring, fear. To be honest, I never told him about this disease until Nov. 07 and at that, I kept it brief and never referred to it by name. Although I am nicely recovering, I think it just scared him too much.

It is what it is...........

#17 jefa


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Posted 27 July 2008 - 08:40 PM

Hi, Donna. I just wanted to let you know that these threads are not part of the chat program. If you see a thread with something that interests you, such as this one, then just add your reply to the thread. Each time a new answer is added, the thread will come back up to the top of the page for others to read. I have merged this with the original thread.

As for chat, we currently have chat at two different times, so you may find there is one which you can join if you are interested. Here is the Chat Schedule.
Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

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