Does your condition affect your socail life.

Hi guys,

I have RP. I am 23 years old. Does your condition affect your social life? My condition certainly gets in the way. I have no side vision and can't see in the dark. My peers are going out and doing things and I have to think about my safety and if I will be able to see what I am doing before I say yes. Is anyone the same?

Comments (8)

Neil_S's picture

Reply to Ali by Neil_S

Hi. Yes, I think most sight loss conditions affect your social life in some shape or form. Transport often needs more planning if you can't drive a vehicle and do not have a friend or relative available or willing to drive you somewhere. As you say, getting around in the dark can be intimidating especially if you are using a long (white) cane and are therefore more visible to others. Accessibility to some venues can be awkward, like difficult steps or staircases to navigate or poorly signposted doors. I find lighting in a lot of pubs is poor, so do you lug around a portable lamp or take a chance on what you are eating (or drinking)?! Sometimes people are willing or helpful to some extent e.g enquiring if you've arranged transport home if you don't know them that well or perhaps will guide you to a seat. Reading menus in cafes or restaurants is another as there appears to be no reasonably consistent format to them. But some menus can be obtained online in advance, although it can be debatable they are in an accessible format to all visually impaired. Even walking about from a drop off point like a bus stop to the entrance of a venue can be daunting, specially if it is up a road where vehicle headlights are dazzling you. Or the opposite - poor street lighting and it is a lot more difficult to detect curbs, notice bollards and posts that can be poorly identified if they are in dark colours. Finding buildings can be difficult if you have never been to them before and they are tucked away or on another floor that you did not expect - that has happened to me a couple of times. And the layout of new venues if new leisure complexes are opened up.

There are probably more issues that I have not thought about, but you tend to adapt as best you can otherwise you would never go anywhere particularly in the shorter winder days. How do you adapt to get out and about and meeting people?

Ali's picture

Reply to Neil_S by Ali

Thank you Neil S for fantastic response. I have a group of friends who understand and they help me whenever I need it but they allow me to approach them for help which I appreciate as I am still independent. The friends who are aware they make sure I feel comfortable and happy in my surroundings. I dislike going out with folk who don't know, folk who don't understand or folk that I haven't told. I feel venerable. I don't drive and I feel bad depending on people for lifts if I can't get public transport. I was recently told my eyesight has decreased and I will be having a white cane for some things. I am worried about this. I know if people comment it's because of their lack of knowledge, not my problem but I am worried that this will affect my friendships and finding that special someone.

-InTheWorldOfTheBlind-'s picture

Reply to Ali by -InTheWorldOfTheBlind-

I think it may affect that, but it may be in a positive way. It's better to have a small, close group of friends than be 'friends' with everyone. In terms of finding a life partner I'd say the same. If someone is good friends with you then they've already been sorted out as not being shallow enough to judge someone for having a disability. Despite all the Hollywood love stories and Glossy mag gossip the best way to find someone special is to find a good friendship and make it grow. My wife and I are best friends. When we're too old and creaky to explore the more... energetic... side of romance, we will still be best friends.

In terms of the white cane I'd suggest, while you still have the sight to see people's responses you get hold of a "Symbol cane". This requires no training unlike the long cane. It is there merely to symbolise your partial sightedness and make others aware of the fact you have a visual impairment.

It's foldable so you could try getting it out in public in areas where it is crowded or when you are crossing a road or in the dark or any other time where you feel being more visibly blind might be of use. I think there may actually be more people who would look oddly at a symbol cane user merely because they are confused about what it is for. You don't tap with it, you just hold it diagonally across your body. Using one will get you used to being seen with a cane and give you a more realistic idea of what kind of response you'd get (generally people are kind and helpful. Sometimes to a ridiculous extent though). Best of all, it folds like most other cans so as long as you have a bag or deep pockets on you, you can go back to looking "normal" if it all gets too much for you.

Ali's picture

Reply to -InTheWorldOfTheBlind- by Ali


Thank you for your response. Merry Christmas and happy New Year. All the best

StrivingS's picture

Reply to Ali by StrivingS

Hi Ali, I am 25 and am both partially sighted and hearing impaired, I have string complex lenses for my glasses and I wear hearing aids. Neither of my conditions were something I shared outside of my immediate family and one or two friends. Over the last 2 years as my sight loss has deteriorated further, I've become more and more socially isolated. Between the actual eye and head pains, the worry for my own safety, especially in winter - I haven't worked recently due to health issues paired with my disability but when I did working in winter months was so difficult because I cannot see in dark/foggy weather, the rain and extreme sunlight also makes my vision worse. I can't take public transport much, between worrying about my own safety and then having my parents worrying it's a frustrating. I've developed an anxiety in social situations purely due to people being unhelpful, judgmental and insensitive in social situations. I have a very small circle due to this, I struggle in emergency situations because I can't understand over the telephone and people often what to meet in places where they might be stood a millisecond away from the spot, if I cannot see them of they change plans without texting I'm left stranded.... Since I was way more independent in the past I find it difficult to share my struggle and ask for help, though I have had to over the past year - I find only people who actually have knowledge or experience with a disability are genuinely understanding and supportive.

I guess we can view this online community as a part of our social life, it's nice in a way to know we are not alone in our struggles. I hope things brighten up for you and I'm glad you have some accommodating friends.

StrivingS's picture

Reply to StrivingS by StrivingS

Reading through all the comments.. I can relate to all the issues and I'm seeing the advice of getting the foldable cane, I'm thinking of ordering it tomorrow. I wondered if you had got it? I think I've reached the acceptance stage, before for many years since I succeeded due to encouragement and support in education by both school/college etc and my family. Being young and dependent protected me, perhaps I was dependent for longer than others but I didn't know better until inevitably reaching my 20's and struggling with things, the pace, safety and communication issues are troubling. It's also sad that people as in potential 'special someones' run gradually or just fail to understand the disability. It's frustrating because nobody wants a relationship where the distance is so great you remain alone in coping with problems. Everything becomes more real and difficult after childhood. Have you always lived with sight loss?

GB's picture

Reply to Ali by GB

My concern due to a special liquidised food with certain food which is very costly it is effecting my budget and can not be understand who else is on the edge of cutting back on food, Cutting back which now I have had to do it don't have teeth checked or treatment I just can not afford. I have carers 24 hrs with complex brain condition this cost big bulk of my budget. Because a went work for 40yrs I have been penalised and have to pay for all my services. because I worked. Social life is none and you know why and being punished hard. Being blind mute, deaf, paralysed epilepsy. Have to travel other part of country to see a professor linked in my rare condition. Does your condition affect my social life the answer is yes

Janice42's picture

Reply to Ali by Janice42

Hi I’m Janice and in my 40’s contact your local hearing and sight loss team in the council, I have a lovely team and I go to a craft club and social club one provide transport but it gets me out and it helps my confidence see what the vision loss team can help with