Visual impairment will initially have an incredibly negative impact on both your mental health and quality of life. The effects range from practical issues regarding daily activities to a decline in psychological wellbeing, and one of the most difficult things to deal with is the feeling of loneliness and social isolation..
Many of the people I’ve spoken with who like me have had to learn to cope with visual impairment comment that one of the hardest things they’ve had to deal with is the feelings of loneliness and social isolation. This is a problem that can negatively affect people’s well-being in a big way because relationships and social support are absolutely key to recovery from any major illness.
When first confronted with your visual impairment you would undoubtedly been unable to go out, socialise, work, and lead a normal life. Doctor’s appointments became your main outlet for meeting anybody. You are virtually home-bound having to stay in bed resting or posturing, so your friends and family have to put in the effort and time to visit you particularly if you live alone. Yet most of the time you find yourself very alone and that makes everything so much more difficult.
Loneliness is best understood as a psychological state in which a person feels a lack of meaningful connectedness to other people; whereas social isolation can be observed when a person lacks opportunities for social contact and interaction. Both of these can be so hard particularly when you’re feeling down due to ill health.
We play many roles in our lifetime – child, partner, parent, friend, acquaintance, client and I’m sure many more. We interact with other people throughout our life journey. We never seem to be alone. We are always busy, but we are also always seeming to connect with other people. Hence when having to deal with the difficulties and uncertainty brought about by ill health we are even more dependent on our relationships than ever before. We will also come to realise perhaps that we’ve taken many of our relationships for granted before.
“When you’re up, your friends know who you are. When you’re down, you know who your friends are.”
What I find the most heart breaking is when many people seem to be left entirely alone dealing with their physical and emotional problems created by serious ill health. At a time when they need friendship, love and support the most, it seems to not exist. This alone will eat away at their mind, making their struggles so much worse.
Dealing with visual impairment is so hard. So many things seem impossible. Particularly at the beginning things like walking and driving are virtually impossible. When you live alone, have no visitors, you spend all your time in isolation and life just seems to dwindle away. You feel unwanted and uncared for, yet there’s nothing you can do, you’re stranded, and these feelings of loneliness and social isolation are so real.
Recovering alone from illness is a seriously difficult challenge. Dressing yourself, washing, cooking, cleaning, shopping and housework are near impossible challenges for those living alone. When any illness strikes, we may find it difficult to do a lot of things that normally would be routine. This of course leads to emotional difficulties, we feel so down, and this problem is intensified by the fact that those closest to us, don’t really understand how hard life becomes.
“Anyone can come into your life and say how much they love you. It takes someone really special to stay in your life and show how much they love you.”
Our inability to effectively communicate the personal experience we go through due to our disability has significant influence on how people perceive us and seemingly the support they’re willing to offer. This is one of the greatest difficulties, being able to clearly convey what is happening, how we feel, our worries, concerns etc.
Chronic illness can be hard to convey to others. With me having visual impairment I know it’s to be true. By looking at me you can’t tell there’s anything wrong. It’s almost impossible to sense that there in fact are so many simple things that challenge me.
When I am with people they often can’t understand what’s wrong with me. I look fine, nothing externally demonstrating my problems. I’d be normal, but then suddenly they would see me suddenly shrink in front of them. I would go from feeling fine to just emptying of all energy.As they can’t see with my eyes, they can’t understand how bad my vision really is, or how many things I struggle to do because of it.
This is one of the biggest problems with visual impairment in that it is an ‘invisible disability.’ When others can’t see anything physically wrong, it leads to mistrust or doubt about whether the individual actually has an illness or perhaps it isn’t as serious as he or she is trying to demonstrate. When the illness is outwardly invisible, people seem to doubt things can be that bad. At times you feel a fraud yourself. You look at other people with clearly visible problems, and think to yourself that they’re in a far worse situation than you are.
I myself have chosen periods of voluntary detachment from others. As I suffer health setbacks I kept myself away from others and limited my interactions with friends. So a cause of your loneliness and social isolation is perhaps yourself, it is something that you subconsciously bring about. You feel that the person you once were has slowly crumbled away leaving who you are now, and that person you now are isn’t as good as was before. You put yourself down, defining your current self by your disability. You’re embarrassed and often uncomfortable in public. This is worsened when visually impaired by not being able to recognise faces. Our new found inabilities make us feel ashamed and we feel the need to distance ourselves.
I know I didn’t want to let on how difficult I was finding things. Why would I want people to feel sorry for me? How could I let people see how vulnerable I felt? To hide these things it was best to isolate myself.
When treatment procedures, pain, medical appointments, and the fear of one’s health deteriorating become the structure of everyday reality, there is this sense that there is nothing occurring in life worth communicating to others. The reality of illness is so mundane who could possibly be interested? Physical isolation also comes in the form of disappointing others and having to constantly cancel and reschedule plans due to illness. After a while, even legitimate excuses wane and personal relationships suffer as a result.
The other problem is time. When you are first inflicted with vision loss, everyone around you will naturally rally their support and assistance. As time passes, so does their support. The irony of this scenario is that as time passes by, the physical conditions and symptoms as well as emotions often worsen, and support is needed even more.
A solution that I want to offer you is to connect with others going through what you are. You are not on your own, there are others with similar problems you can join forces with, and enjoy their support where you can enrich each other’s lives. A word of warning, do not get stuck in complaining about your misfortunes, sharing your sob stories, together find and share ways to improve your life.
I first thought that there was nobody else who had to suffer in the same way as I do. For years I had nobody to discuss or share similar problems with. It was only when I met others going through what I was at ‘Action for the Blind’ that I no longer felt alone. At last I realised, I was not alone. I learnt there were others who had to endure similar difficulties. Sometimes they manage to cope well; other times they find it harder to cope. But they can be there to support each other.
By connecting with others going through similar health problems can become a major tonic. You not only realise you’re not alone dealing with what you are but you can share improvements, lessons that you’ve learnt, support each other in getting past the ‘problems.’ Unlike the rest of the world, including your family and friends, those in the support group will get what you’re going through.
You may find that some people that you thought would be there for you, are not there. Try not to let this jeopardise your recovery. Thinking about it or stressing out will only make it more difficult for you to do the things that you can. Remember that you are number one while recovering. You need to understand that it is uncomfortable for the non-ill person to view their loved one’s physical deterioration and to know what to say without first hand experience of severe illness.
You can no longer allow your feelings of loneliness and social isolation to handicap you. You must try to communicate with your loved ones how you feel, and explain to them why you need them. But also understand one thing, it is your response and the way you are being that brings much of what is happening to your life. If you start to live again, find positivity, then people will want to reconnect with you. So begin to live. Try and find something that you enjoy, develop an interest or a hobby. Start to work hard at achieving something make that your mark, demonstrating to the world that you are not just a survivor but somebody that can make the best out of your life no matter what has happened to you.
Naturally you cannot cure your illness or disability but you can learn how to live your live to the best, and people I assure you will want to know you.
I look forward to connecting with others who like me have visual impairment. You know where I am.