Scleroderma

Chicpease

Was diagnosed with scleroderma at the age of 19. I am now 43 and have realised for the last 15 years largely due to change in appearance and physical ability, I have been hiding myself away and limiting my social interaction. Has anyone else experienced this? How do I change what has become normal? 🤔

Shell_H

Hi @Chicpease - welcome to the online community!

I can share that you are not alone with this issue! I too hide away socially and limit what I do with other people. Changing is difficult! I have anxiety which is specifically triggered by seeing different people, especially strangers, and leaving the safety of my home. This makes it very difficult to actually have friends and interact with people, which is something I miss a lot.

It's not an easy thing to change or fix, either. Part of it is identifying exactly why you don't like going out, or what you are scared of (for me) etc. Like you have - saying it's partly due to feeling like your physical ability hinders you and you don't like the change in your appearance. Then it's finding out what you can do despite this. The physical ability is easier - there are quite a lot of activities you oculd think of which you could do, such as a dinner, going out to the movies or theater, having a games or cards evening, joining a book club etc which fit with what you fell you are physically able to do.

The appearance is more knotty - much like my anxiety with strangers and leaving the house. I've found if I'm going to a spcific place I know, preferably with someone when I leave the house (so they could pick me up, for example), and I'm meeting poeple I know and doing an activity which is fun for us all (my firends and I play a lot of board games) it's easier for me. I've found my triggers - normally the worst is at the point of leaving the house (I could be fine up until this point, then hit a "wall" and have to stop) - and the causes of my anxiety - strangers, not knowing what we'll be doing, unsafe places and particularly leaving the house alone - and worked around them. This allows me to go out and see friends twice a week, which is amazing.

You'll need to do something similar yourself - such as identifying frineds or relatives who you don't mind seeing you as you are, or who you know don't caer what you look like, and start off doing something where you wont be around stangers, or it will be dark (like movies or theatre). Then you don't need to worry about your appearance. As you get more practiced you'll be able to do more.

Changing habbits and practices is very difficult. Start small, work up. If you have a friend or relative you can talk to about your worries that will help - as they can then come with you to help you. Try commiting to something once a month and keep that up, then set up a fortnightly meet up, say around your house with just the poeple you want to invite, and go from there. Making or breaking habbits is one of the hardest things to do, so don't give up and do be kind to yourself. Slipping up isn't the end of the world nor does it mean you've failed. As long as you keep trying, you never fail 😊

I'm sure some of our other members have advice which might help. If you do find yourself with a lot of anxiety about this you can also talk to your doctor - counselling can really help and you can get a 6-12 week course on the NHS if you need it. We also have some resources which may be useful:

https://www.versusarthritis.org/about-arthritis/managing-symptoms/emotional-wellbeing/

I hope what I've said has helped. It's lovely to meet you!

Shell

Mike1

The only social interaction I have outside my home is when I go to the village shop for milk or have a medical appointment. There are several reasons for this, the most obvious being the withdrawal of my driving licence by the DVLA on disability grounds, however before this I found myself restricting what I did as I was getting fed up either being stared at when in my wheelchair or being ignored. I have been blanked by people that I had known for years when out in my chair, several despite me saying hello as soon as I saw them. Prior to losing my licence I was involved in charity work and ran a team of 40+ in Devon and Cornwall, all bar 2 have made no contact with me despite being aware of my circumstances and supposedly being friends. The only thing that made me chuckle when in my wheelchair is when being stared at by children, my response is "this is what a Darlek looks like inside", sometimes they laugh but once or twice the opposite has occurred! I am aware that I am becoming more reclusive but on the whole I am happier being at home with my cat, I have never liked crowds anyway and with the amount of "holiday makers" in Cornwall at the moment spreading Covid like wildfire there is no way I would be going anywhere anyway.