Talking to family members about our scleroderma

it is extremely difficult because Scleroderma is so unpredicatable in terms of how fast or slow it progresses. I have my bi annual heart and lung function tests and blood tests. To be fair i have stopped talking about my scleroderma because people just don't 'get it' and think i'm exaggerating when i talk about the worse case scenarios. . I know from the symptoms i have that my condition is slowly getting worse. My hands are very tight and are constantly cut and sore and ulcerated. The rheumatism in my joints is evident through the lumps and bumps and pain and i could cry some days. But...because on the whole we look all right then that is what people want to know - that you're all right. i tend now to talk to people who have raynauds or scleroderma and mention my illness very little to family. if and when the day comes that i am told the illness is progressing faster then they will have to face up to it. but until that day i am happy to discuss my fears with people who know what I'm talking about. i hope all goes well for you

Thank you for your reply. I'm sorry that your condition is slowly getting worse. I tend to look alright too, and have always been grateful for that, but it has its downside when people can't 'see' what's wrong - as a lot of symptoms are internal. And I think that most of us know the worse case scenarios as we are realistic and educated, but of course, we try to remain positive and hope they won't apply to us. I hope you can get some relief for your sore hands. It is good to speak to people here who understand.

Families are just a reflection of society in general. Some people are more understanding than others or more accepting than others.

I don't tend to discuss my condition with family. People find it difficult to deal with chronic illness. That's all people patients and family/friends.

I think the internet is valuable in that regard as it allows the opportunity to get support from others who truly understand, and forums such as this provide a source of information for any family or friends who may actually be seeking advice.

In my experience the condition waxes and wanes. When I have a bad run, I will not let myself believe that there is only one direction for it to continue. I think my belligerent attitude keeps some of the worse effects at bay. Fingers crossed anyway

Thank you for your reply. Yes, I think you're right in that families are just a reflection of society in general. I am very lucky in that I have about 4 friends who I can discuss chonic illness with, as they have illnesses themselves. So I feel I need to not have such high expectations of my family, if they have reached a point where they do not understand the progression/changes in scleroderma, and do not wnat me to talk about it.

Yes, like you, I have never believed my condition will necessarily get worse, and have always been very positive about it. So I think I'm just getting used to the fact that I've been having a bit of a bad run - my first in 15 years.

Many thanks for all your thoughts.

I am sorry that you are going thru this. yes this is a odd condition due to not "looking sick" when we are very sick. I was given the news 5 years ago, but have had it for about 7 years now, I have Raynauds and Scleroderma. trying to tell people is hard because not alot of people have heard of it. I have even seen Doctors that had to ask me about it, they had heard of it but never had seen it. I carry a binder full of all of the info of my conditions, I even had out copies of then to anyone who is interested. I have found that it is easier to let them read, then me trying to tell then. this also makes it "real" and I would give one to your family member and tell them that if they want more info as you get further along in the journy "as I call it" you would be happy to give then another hand out. I update mine as things change, I also keep a journal to write in. I put everything in it with dates so my meds can be adjusted as needed. my Doctors love this. I have 2 very good Doctors and one of them calls Scleroderma " nasty and tricky to treat"! he is at IU here in Indy. I have learned to live with the fact that we can only treat and not cure this, we all just have to take it one day at a time. when I found out, I cried for days out of fear and no one to talk to that understood. that changed when I found this web site, I visit often and see that everyone is happy to help with any problem. I am 43 now and am starting to get R/ Artritus, along with other things. My dream was to see the world with my husband when he retires, that dream is being lived now. we started 4 years ago because we knew that my journey would not allow us to do it later. I have been told that my journey will not be a fun one once I hit 50. Hang in there and my God find a cure for all of us!!!!!

Sorry im new to all this myself and defo have raynauds waiting for results from shoulder xrays and thermology results also. But I don't have tight skin on my hands. But the pain in my full arm. Especially on waking up is horrific. To the extend that I do often sit cryin as again family just don't get the pain or the illness as its not seen. I also suffer heart failure and I was 43 Xmas day. And feel my life isn't even worth living for already as its been hard enough since 2004 when was diagnosed with heart failure. But when my left hand started playing up and makin things just so hard that I could barely even use it. That was be4 the arm pain started. And bein left handed. Its all to much most days. Wondering what U mean by ur journey won't be fun by time ur 50. As I say im new and no nothing about this yet. Great being able to get answers of people who do no about it. Good luck and hope every1 is ok and not avin to much pain.

I was told by my Doctors that "my journey" will take 15-20 years to fully complete. 35+15= 50, this will be when everything will be what it is to be. as time goes by, more problems will come out. my Scleroderma will be "at a head" and at a state of completion. meaning, this is the worst it will be. I am told that I will be in a wheelchair, due to the R/A and movement problems with the skin being tight. we are traving now, and hope to continue after this period. it will just be harder to do the things we love! we love to cruise, we have been cave tubing, climbed the ruins in Mexico, horseback riding on the beach, ect. my Doctors are very straight with me, I don't want the sugar coating. I am sorry you are having a rough time right now, you should be able to get the pain under control with meds. if you Dr. can't or won't hepl you, get to another Dr. I have been going to IU here in Indy and have been to the Mayo in Jacksonville, FL. in order to get everything under control. don't be shy about asking to go to a Scleroderma clinic, that work wonders! hang in there..........

IV only just ad few tests for scleroderma. Waitin in the results. I av no tightening of skin or dry skin. But with my shoulder/arm pain and my bein able to swallow only certain things they say I could have it. Back at hospital Tues for results. And good to see ur living yr dream now while U feel up to doing so. Wanting a cruise this year with my partner. Just trying to look for the best to go for.

Thank you for your reply. Yes, I know what you mean. It's hard to explain these conditions as most people have never heard of them. I tend to say that Scleroderma is a bit like Lupus (if they have heard of that ) and affects different bits of you, or I say that it's a skin condition when they suddenly point out the discoloured lump of calcinosis on my elbow (usually when in a conversation about something else, and it always takes me by surprise when people do that !)

A local nurse recently told me that I don't have an auto immune condition because I'm not on steriods! (I don't think she had heard of scleroderma, but she wouldn't admit it!)

Thank you for the advice on giving people info to read. Unfortunately, it seems that most of my family at the moment would not welcome this/be interested enough to read, and I say this because of the reactions I've been getting from them recently. I feel that they would think I was attention seeking and pushing things if I did this. And I want to talk to them about all of this, but they don't want to talk to me!

But I will think of it in the future for doctors/interested friends, etc. I think it's a very good idea if people are responsive to it.

I am glad you are following your dream of seeing the world now.

I guess in terms of age, you never know what will happen when you are 50. I was diagnosed in my twenties, which is very uncommon with scleroderma, so in my experience, I think you really never know. I was also diagnosed with a gynae condition at the age of 35, and it's very uncommon to be diagnosed with that before your 50s. I do hope you can still be travelling when you hit 50.

Many thanks for your warm thoughts, and you hang in there too!

Hi JemimaDoll,I'm sorry you are having communication problems with your loved ones.This is a very unpredictable time of the year for peoples emotions and we must take everyones feelings into account.I know, I am more sensitive just now.

Waiting for results is a very anxious time,unfortunately we all have to experience this including the people close to us who do not know what to say for fear of showing a lack of understanding.

Something that may help is to write down your concerns and maybe inviting your close ones to read what you write.They may want to read this when they are alone and give feed back when they are ready.Please don't forget they do not have answers to our questions which is as upsetting for them as is is for us.

When the time comes to get the results from tests does someone go with you? If not,why not ask someone if they would go with you and they could give other close ones the outcome and possible treatment involved.

If they have any concerns they could write them down and discuss them.

Scleroderma as you know affects everyone differently and is so unpredictable.We must take what we have and make the most of our lives.We have to try and deal with what scleroderma throws at us and remember most people are dealing with health problems at some point.

This may sound a bit flippant,believe me it is not meant to be.I was diagnosed with scleroderma twelve years ago when I was 56 but was told I had it for years before that.

I have all the finger problems including ulcers and fingers half bent.My circulation is so poor when I had an operation on my foot 18 months ago it would not heal and after visiting hospital on a weekly basis since I am having another op in February.If this does not help the next procedure would be partial amputation but not knowing where a safe spot would be is a bit worrying.

I see a mouth and face specialist in 2 weeks with problems.I should have had more illoprost treatment in November but up to date there is no bed available.I have 6hrs daily for 7 days usually twice yearly.

I really hope you and your close ones are able to start communicating again.Happy New Year.

Hi Smiler2012, thank you for your reply. Yes, I know, Christmas is never the best time of year emotionally.

A family member used to come with me to annual appts, many years ago, when I was first diagnosed, and was very supportive back then, when everything looked good and stable. I thanked him very much, and I think I said I was ok to go to appts by myself, after a while (so that he wouldn't have to rearrange his work, etc). And he has always remained supportive until now. I have always had a very independent, positive and 'I'll be fine' attitude to the scleroderma, so perhaps I have brought this on myself!

And I am very lucky that things have remained stable for years until the last few months, where a few more things seem to be happening. Other family members know I have been going to more appts recently, and no one has ever offered to accompany me. I haven't even been able to get them to visit me at home for 2.5 years, just generally/socially! (Excuses range from the journey being too far - around 1.5 hrs - to them being busy/my flat is too small, etc,etc. So I have to visit them).

So I am pretty sure that they would all say no if I asked them to come with me to hospital appts. That's the problem.

I wish they would read some info, but I really don't think they want to/they aren't interested. One family member admitted he thought it was boring when I tried to explain one symptom to him!

Yes, many of them have had health problems/operations, and I have offered support, visited them in hospital and been thanked for my support, and I do feel I try to be there for them.

I want to communicate with them more, but the more I say, the worse it gets and they just want me to be quiet!

Your symptoms regarding your circulation/ulcers and fingers and feet sound really difficult. I wish you all the best with your appts and operations. I hope the operation in February is successful. It sounds tiring having to visit the hospital on a weekly basis.

Thank you so much for all your thoughts and best wishes. Happy New Year to you too.

Firstly, not only are we all different in how we cope with our illness but so are our relatives and friends. Quite often it is because they are afraid of knowing the truth or don't want to appear to be concerned. In other cases it may be that as you say, they really don't understand how you feel and don;'t know how to cope with the situation. I find it easier to try and cope with it myself and find that even my sons never ask how I am, so I just always tell people I am fine - it is easier that way! It has taken my husband many, many years to really understand about scleroderma and now he is very supportive.