10 Tips for Studying With a Vision Impairment

The new study year is upon us, I'll be in my final year of psychology and I'm sure there's many of you also returning to uni, school or college. I though it would be beneficial to put together a list of tips for studying with a vision impairment not just for anyone reading this but also for myself so I can stick to it throughout the year!

I have been at university now for close to ten years, half of that time I had perfect 20/20 vision, the other half I have slipped to legal blindness at 6/60. Just acknowledging this is a crazy thought - I still to this day can't fathom how I've gotten to this stage! Despite the lack of vision, I have remained determined to keep studying and find a career I love and can maintain with my vision. So here are the tips I've picked up along the way:

1. Take frequent breaks. This is a given for anybody studying, vision impaired or not. But if you have a vision impairment it is important to take more frequent breaks to give your eyes a rest and let them recharge before slaving over more readings or assignments. I try and force myself to take a break every 30 minutes, or when my eyes are starting to hurt and struggle to focus. When you take a break, make sure you do something that doesn't use your eyes. I like to put on some music or an audio book or get in a little bit of mindfulness meditation which also helps me re-focus. Find something that works for you, that gives your eyes a rest and also helps you to relax. If you take frequent breaks, you will be able to study for longer periods of time, perfect for those cram sessions!

2. Utilise adaptive technology. There is an abundance of adaptive technology options available to help in all sorts of study situations. I use Zoomtext for my computer/laptop, I use an iPad for screen reading of textbooks and documents, I have multiple hand held magnifiers for paper documents and also a CCTV. There are so many options available that can suit your needs. The best place to start is by getting in contact with a low vision service in your local area. The most important thing to remember is that it takes time to get used to using these devices and to be patient. I was extremely resistant to using a lot of them but once I got the hang of them and realised how much they help I can't do without them. 

3. Learn how to listen rather than read. This was something I was resistant of doing for a long time. It seems like a basic concept, to listen to a textbook rather than read it, but it's actually a different way of absorbing information and it takes time to get used to. I would use the reader option in iBooks on my iPad, and within 30 seconds the voice had put me to sleep! It's also harder to take in information from a long document by listening to it (especially when it's read by a computer or monotone voice). It takes some time to get used to but once you've got the hang of it you will wonder why you didn't start earlier. It gives your eyes a chance to have a break whilst still being productive and taking in information. Definitely a skill that should be honed! 

4. Be organised and prepared. This is probably my biggest downfall. I am a last minute crammer and will leave my assignments until the day they are due. Possibly because I like to torture myself. I've now learnt you CAN NOT do this when you have a vision impairment. It creates more stress and leaves you with migraines that last days. Make sure you get yourself organised at the start of semester. Plan when assignments are due and start them early so you can do a bit each day over a few weeks. Be diligent with this as you will pay the consequences if you leave things to the last minute. 

5. Build relationships with staff, students and institutions. This is important to ensure you have the support you need. Don't be afraid to ask if you need help with something or to get work in a format you can read. Find the staff members you most trust and use them as a point of information. It is also beneficial to have friends who are doing your course who can help at short notice if you need it. Having studied my last course via distance, sometimes this is hard as you don't get to meet any other students. Facebook works wonders for this and there's always someone willing to help out. The most common problem I come across is missing textbook chapters and other students have offered to scan them for me instead of waiting for the uni. 

6. Know your rights and entitlements. As I have mentioned in previous posts, sometimes you have to stand up for your rights. Everyone has the right to an education and reasonable adjustments need to be made for a person with a disability - don't let anybody tell you otherwise. Most institutions have a disability centre that can help with most things but still familiarise yourself with your rights. Don't be afraid to stand up for yourself and ask for the adjustments or resources you need to succeed.

7. Don't over commit. This is something I also tend to do - take on too many subjects. If you have just begun studying, start with a small workload and see how you go. You can then take on extra subjects in subsequent semesters. You don't want to put yourself in a position where you are stressed and don't do your best. 

8. Don't be afraid to ask for help. If you need help - ASK. Don't be embarrassed or feel that you are useless. There's nothing wrong with asking for help in any situation not just studying. Not only will this benefit yourself, it will also help others to understand your situation and the impact a vision impairment can have. It's a win win for all!

9. Find what works for you to minimise symptoms. The most common symptoms I experience are eye strain, eye pain, headaches, migraines and even nausea if I've been at it for too long. Find little tricks that work for you to help minimise these symptoms. Apart from taking breaks, try a cold compress on your eyes. This will reduce some of the pain and strain. I also use cucumbers- they actually work! Don't forget to look after yourself, get a massage to reduce tension in your head and neck from straining to see. 

10. Stay positive through the tough times. Studying is not a walk in the park. It can be hard work. It can be demanding and stressful. There will be times when you just want to throw in the towel, it's too hard, it hurts too much or it's too much of a struggle. Don't give up! You can get through it, and achieve great results. Don't let your vision be a hindrance, it doesn't need to be. It doesn't change your intelligence or your chances of success. Everything is achievable!

The things you don't get told!

Over the past few years I've learnt so much more about what is actually involved in being vision impaired. When I was diagnosed, I was not told much except I will progressively lose my central vision. I was not warned of any of the other aspects I might experience. Here's a list of things I've learnt and what I do to help. Please share any other tips!

1. Eye pain: Typically I experience eye pain after a day at work or a solid studying session (usually after about one hour). I'm assuming it is related to the strain I put on my eyes to try and see everything as best I can! I experience this daily and it gets VERY frustrating.
What helps: Before reaching for my Panadols (paracentamol) I first try and rest my eyes. Since I always have to be doing something I will either close my eyes and meditate or have a nap. Obviously I can't just lay on the floor for a nap at work (I have tried!) so in worst case scenarios I go for pain killers. I also have found an eye drop that has helped with the burning and heat (Systane Ultra) and you can use this as much as needed. I usually use this after being on the computer. 

2. Headaches/Migraines: This is something I've struggled with for a few years. Generally I get a migraine on my left side which is the weaker eye. Migraines can be extremely debilitating as not only is the pain intense it can cause nausea and further sensitivity to light. I've learnt my triggers for an attack, including sun glare and overworked eyes, so I try to intervene as soon as I feel it starting to take over. Sometimes the attacks are so severe I have to take time off work. At the moment I get about one a month which has reduced. 
What helps: If I am having an attack, I sit (or sleep!) in a dark room and usually wrap a scarf around my head (the pressure helps the pain). Generally I don't find over the counter pain killers effective and I avoid taking anything stronger. My migraines have improved since changing other medications I was on so it's best to talk to your doctor too. Someone also told me to put a drop of lavender oil on each temple and I find this relaxing. To prevent an attack, I'll avoid spending too much time outdoors on a day with high glare and always wear sunglasses outside, which is a given for Stargardt's. And drink loads of water!

3. Sensitivity to light: Some days are ridiculously hard to be outdoors and even inside with the curtains open. Not only does it lead to headaches and migraines, I find it harder to focus and see. I'm guessing this is because the peripheral vision uses light perception to form vision, and since that is what I rely on to see, I am extra sensitive to it. 
What helps: If outdoors always sunglasses! Otherwise unfortunately it's a day where instead of being outside I put on a movie and stay inside!

4. Neck/back pain: I'm surprised my neck is still attached to my body after all the bending it does to read! I'm constantly leaning closer to the computer screen, iPad or whatever is I want to see! This is another constant pain. 
What helps: Making sure that the desk you are working off is set up well, with an arm for the screen. Also any adaptive technology to make the font bigger to eliminate the need to lean. I've also found that getting a remedial massage once a month to be a great help (and I enjoy massages). Massage also helps with the migraines/headaches. 

5. Anxiety/Depression: This is a HUGE part of diagnosis that is not addressed. It is understandable that when you are told that you are losing your vision, feelings of anxiety and/or depression develop. It is a hard thing to deal with. The most important thing to remember is you are not alone in this!
What helps: Talking about how you feel and what you are going through can help a huge deal, if it means talking to friends or family or speaking to a therapist. There's lots of strategies to deal with anxiety and depression and it's not something to be ashamed of. I for one battle anxiety a great deal. As I've mentioned in a previous post the grieving process ties in with these feelings. Also try mindfulness meditation, I have found it really helpful and it's also a time where I can rest my eyes. 

Our experiences are similar but also unique. The best thing we can do is talk about them and help one another. Sometimes simply knowing somebody else is experiencing the same pain or emotions can make you feel a little better. 

The Grieving Process

Usually when we think about grief we only think about the loss of a loved one. We can also experience extreme grief in other situations, including the one we face after being diagnosed with a vision impairment which will ultimately send us legally blind. In fact, we are really grieving the loss of our vision, our independence, our hopes and dreams for the future.

I hope my experience was unique, although I highly doubt it was, but I truly felt abandoned at my time of diagnosis, like I was left in the dark by health professionals and given no guidance, no encouragement and no hope. As I have mentioned previously, I was told “you have a condition called Stargardt’s Disease, there’s no treatment, so there’s not really any point in us seeing you again unless you face problems in the future”. I walked out of the ophthalmologist’s office feeling lost, confused and helpless. Being a person who you could probably describe as a perfectionist, I had my whole life planned, aspirations, goals, career paths, and it was all taken from me without any real explanation. I began grieving the impending loss of my vision and all that would follow.

A common model of grief (Kubler-Ross model) talks about five stages of grief. When grieving, you can go through the stages and then revert to a previous stage. The experience is different for each individual. Denial is commonly the first stage. “I don’t have this condition I see fine” or “they must have it wrong, we have no family history of eye disorders” were common thoughts I had. I really think I spent the last two years in and out of denial until I received the result of my genetic testing which finally confirmed that I have the faulty gene.

Anger then follows, “why me” or “thanks mum and dad for giving me rubbish genes”. The thought of “why me” went around and around in circles in my head. I was also angry about the timing, just finishing my degree and with my independent adult life ahead of me.

Another stage of bargaining also takes place. This made me search for hours on end for alternative methods to halt the process, diets , supplements, miracle cures that were hiding somewhere. Although this is not necessarily detrimental, if it gets to the point of being all consuming it can be quite distressing.

Of course depression shows its head in the process. This stage is probably the most likely to reappear. Just as you think you are coping ok, bam, he’s back. I’ve allowed myself to have the days where I do get down about the situation, as long as I promise myself I will get back up. It is ok to feel sad, we are losing an integral sense, but we need to remember that there’s a way through this.

Finally we meet acceptance. I don’t think I’m there yet. I may tell myself and others around me that I have accepted my condition, but deep within me I know I haven’t. It’s also hard to truly accept a degenerative condition because just as you start feeling at ease with the situation, your vision deteriorates and you feel as though you are back to square one.

All in all, it is absolutely normal and healthy to feel each one of these emotions and different times. I highly recommend speaking to a professional. I think it should be mandatory that when a person is diagnosed with a vision impairment they are offered counselling and support. Also talking to family and friends can help with the process, after all, it is likely they are grieving with you and feel even more helpless than you do as they don’t know how you feel or how to help. We should all remember that to feel this way is normal and know that you are not alone.

Below are some helpful links.

Headspace Australia - Grief

Beyond Blue Australia

Mental Health America

Mental Health Foundation UK

For the girls (and guys?!)

Something I have been battling for a while is grooming. It's ever so hard to do the usual girly grooming that when you are sighted you take for granted. It seems like a petty issue but it can have a whole lot of impacts especially with self esteem.

My biggest problem now is I can't tell when it's time to visit the beautician. It gets to the point where one of my younger brothers will say "geez you need a wax" and it's off to the beautician I go. There's no chance I can do it myself any more as I can't see the little hairs. It then gets me thinking what have I been looking like every day?! Most people don't like pointing out things like this so I now rely on my family to give me the heads up. 

Another important issue is putting on make-up. I've had people ask me how do I put on eye liner if I can't see? Well I end up poking myself in the eye and usually I end up with the "smoky" look when I wasn't going for that at all. Luckily years of experience have meant I can put make-up on without looking to a degree, and then I hope someone tells me if I've made a mess of my face before I walk out the door.

For instance, I went to work and for a few hours I went on my merry way until a friend asked me if I had grey hairs. Grey hair I'm only 26!!! It turned out I had foundation in my hair and she fixed it for me. But in the 2 hours before that no one mentioned anything! 

I guess now I need to rely on others more often even though I am very resistant to doing so. I'm also lucky I live with other people so I can always ask if I'm looking terrible (and hope they give me an honest answer). 

So if you see me and I have make up all over my face, please tell me because I guarantee you I can't see it!

DNA tells all

I recently got preliminary results from my genetic testing (that I did almost two years ago now!). They showed that I do have the mutation in the ABCA4 gene and it is the recessive condition. I need to have further testing to determine whether I have two recessive genes (from each of my parents) or one recessive and a gap (only one parent has the recessive gene). We can then go on to test my parents and my siblings if they choose to.

I must admit it is quite confronting getting the results. Even though the condition is 99% diagnosed from other methods such as EPS and deterioration can be seen in the macula, there's still always that small doubt or hope that I have been wrongly diagnosed and have another condition with a treatment. It is such a tiny hope but I found myself holding onto it in the back of my mind. 

Finally being told that yes, your genes definitely show this condition, I got slightly emotional, even though I've known I have SD for a few years now.

In my true style, I had a small sook, sneaked some cuddles from my work colleagues, and turned the positive me back on to think of more ways I can help myself reach my goals, and most of all inspire others. 

Being genetically counselled

I had made an appointment to see a genetic counsellor about 3 months ago and the time came this week. I hadn't really given much thought to it to be honest. The main reason I went was to do genetic testing to find out if I actually have the known Stargardt's mutated gene, as I feel like it will be the final thing in accepting my diagnosis, even though I know I do have it.

So I went along to my appointment not knowing what to expect. Normally when I am seeing a doctor I have what I want to know planned out. This time I was under prepared for my usual standards.

The genetic counsellor was really great; she had easy to understand diagrams that showed the most likely way I inherited Stargardt's, and then showed me possibilities of when I have children. The good news is that the chances of my partner being a carrier is quite rare, and thus it's likely my children won't have any chance of inheriting Stargardt's. There's the possibility of testing my partner in future to see if he is a carrier, but to be honest I don't think it would matter because it wouldn't affect my decision to have children if they were at risk. I cope well and have a great life!

The other question is whether to test my younger siblings. There's currently two debates in my household
1. There's not point in knowing because you can't stop it or change it
2. If you knew you could make decisions about careers etc and also use preventative measures like wearing sunglasses at all time and so forth.

It's a hard decision and there will be more debates in our home.

So I have to give blood and it will be sent to the US for testing which will take a few months, which is not good for someone like me who is so impatient.

DNA Testing

Today I finally got the courage to go an get all the blood sucked out of me. Well it felt like all of it.

When it comes to needles I generally swing two ways - either I'm the bravest person you'll ever meet and it doesn't phase me, or I'm the biggest baby. Today I was a baby.

I went to get my blood taken to send to the Inherited Retinal Diseases Register to get genetically tested. I have been meaning to do this for a while, had many discussions with my family about ethical issues, and finally decided to do it as I would actually get the results. We are also planning on getting my parents blood taken too and possibly my siblings.

So in my nervous state I took myself down to the pathologist, with my friend who had to put up with me. They took SIX VILES of my blood. I don't think I have much more than that and to top it off I have the worst veins and it is always an ordeal to take blood from me.

But with my friend by my side distracting me I sucked it up and tried to look brave while I sat there for what felt like an hour with the needle in my arm sucking out the blood. I must admit it was one of the longest blood tests I've had!

I feel as though this genetic test will 100% confrim my Stargardt's, even though clinically I do have it, but there is always a doubt and 'what if' I have something else?

I encourage any Aussies who haven't already made contact with the Inherited Retinal Diseases Register to do so. They are really helpful. Here's their link.

Inherited Retinal Diseases Register

Relationships

Having a visual impairment does not just affect your every day life but also your relationships.

I had been in a long term relationship and was diagnosed with Stargardt's Disease. This had a huge impact. I had to pretty much change my whole life plan. Not only that, I started making rash decisions as I was afraid of what the future would hold.

It takes time to accept diagnosis, and I feel as though I am coming closer to total acceptance. Instead of jumping to conclusions and seeing my condition negatively I have started looking at it in a positive light and all the things I still can achieve, and being legally blind will make it that much more special.

My relationship broke down and I feel as though my condition did play a part in that. I now have fears as to "who would want to be with someone with my baggage". Possibly I have watched too much Jerry Springer 'Excess Baggage' but it always stays in the back of your mind.

I know it sounds silly and there are amazing people in the world but the doubt always hangs over. It's just another way that Stargardt's has affected my life and I'm sure others lives as well.

Sore Eyes

I have been having problems recently with constant sore eyes and migraines. It's really starting to get on my nerves because I can't be outside in the sun or even in bright rooms. The only thing that seems to work is to lay down in the dark and close my eyes, which is very unproductive.

I find I constantly strain my eyes and the only way for me not to do this is to pretty much do nothing. Which is not going to happen.

So I've taken to wearing sunglasses in the house to try and minimise my light exposure. Right now I'm wearing sunglasses in my dark room on the computer (I must look pretty strange), but let me tell you it's helping! Bright light is really painful. Maybe I'm related to Edward Cullen?

As for the constant headaches and eye strain when I don't have a choice but to keep doing what I'm doing - I have yet to fins a solution. I will though!

Until then I will wear sunglasses indoors, and if somebody is boring me I can close my eyes and doze off and they won't even notice!

Being Legally Blind

I found out last week that I am classified as legally blind. I have actually been legally blind for some time but did not know.

I think I knew in the back of mind that I was, after all I can only read the big letter on the eye chart and if I don't have glasses on the world is a foggy blur, yet I wasn't ready to actually KNOW I was legally blind. I phoned my optometrist to find out my sight and it is 6/60 (20/200).

It's crazy to think I am "legally blind" as I live my life almost as if I would if  I had perfect vision. I have a job in a hospital, I'm studying a masters degree and I like to think I can appreciate nature around me. It made me realise that I, like so many other people, had the perception that if you are blind, you see nothing and you struggle in basic daily activities. How wrong that is!

It is actually quite amazing how much I have subconsciously adapted to my condition. It took a few years for my diagnosis and I probably had the condition way before that. I think because I didn't know what was wrong I found ways to do everything, like read by using my peripheral. I wasn't even aware that I was doing it! It does cause me strain and I have constant headaches but I will find a way to rid myself of them!

Just because I am legally blind doesn't mean I'm giving up on what I want in life, I just have to find a different way to get to it.

Not just a vision issue

So it’s taken me a while to be able to bring this up on here because it’s quite a complicated topic. Not only was I diagnosed with stargardt’s disease, but I have slowly developed an anxiety disorder which can be attributed to my diagnosis.

It is such a hard thing to deal with when you  are young, feel like you are in your prime and your life is just about to start, and bam, you’ve got an incurable disease that you can’t hide from because it’s in your eyes. I will admit I act quite tough about the situation but I definitely have my low times over the issue and I let myself have a cry over it before I tell myself to harden up and that I have a whole life to live for.

Being told you can’t see well is such a blow, even if you realised it prior, but I started doubting myself in so many ways. It went from not being able to drive, to being scared to be in a car because it is hard to read signs and see what’s ahead of me.

As a person who always has to be in control and needs to know EVERYTHING about what is happening to me and in the world, I found it quite confronting when I was told of my diagnosis. I was scared to go out at night because I felt I couldn’t see and I was in total darkness, whereas I think this is partly psychological as my EPS study showed my night vision isn’t affected.

I think there is not only the issue of dealing with vision impairment but also the other issues that arise with it; it’s not just about finding ways to get around or ways to work, but also how it affects us psychologically, because I am sure I am not alone with this. Not only am I dealing with my vision impairment, I am also dealing with a severe anxiety disorder that is life limiting. Double whammy or what.

So I encourage you all to speak out because we are in this together, and nothing is more helpful than hearing that someone else is experiencing the same thing.

Sore head

I've found that I have constant problems with migraines. It gets very painful right behind my eyes and can sometimes be so painful I feel quite nauseous. I had to leave work early the other day because I could not function.

I've put it down to a couple of things. The glare has been absolutely destroying my eyes, even when I'm indoors, making me feel like I need to be nocturnal to escape it. It literally makes me feel as though I can't see. Everything is way too bright to take in and I just want to close my eyes. Sunglasses would probably help but I can't bring myself to walk around the hospital I work in wearing my sunglasses. People would think I am strange or even rude! I was under the impression the glasses I have controlled glare, or maybe this summer sun through the clouds is just no match.

The computer screen has also been giving me grief, especially after having holidays and not having to stare at it all day. If it's too bright it hurts, if it's too dark I can't read it - you just can't win! I am looking into investing in an anti glare screen to use at work, shame I can't use is to control the weather!

Until then, I will cope with a nice dark room, my bed and some shut eye!

Blinding Darkness

In the past few weeks I have noticed that in the dark I can see less and less. It's starting to scare me just a tad. 


I find it quite confronting looking ahead and not being able to decipher what is happening. It seems like all the lights merge together in a big blur and I have to concentrate very hard to figure out what is going on. All I want to to is be able to see the distance clearly.


Another thing I noticed a while back was the fact that when I look up at the moon I can't see it! If I look above or below it I can see it in my peripheral, but you can't see it very well because it's so far away. I want to be able to look up at the moon again!


This has brought up, for me, how badly I want someone somewhere in the world to find a treatment and help us all out. It can be quite distressing at times, and I'm sure I'm not the only one that feels scared and helpless and quite stressed about the situation. 


So once again, I'm hoping and have my fingers and toes crossed that a breakthrough is made very soon and we can all celebrate!