Do you get scared?

[John Smith]

Louise,

You are absolutely right about the benefit of talking to someone who understands. That's exactly why the group exists.

On the "Members only" section of the main site (reach it by clicking on "Home page" above), there is a section listing members all over the country who are prepared to spend the time helping out others, and this is all organised by locality.

To anyone who doesn't want to post here, but could talk to someone on the phone, just look at that section, and pick up the phone. We're there for you!

[Pat A]

If you've read some of my forum posts you will know I've been scared too. And today has gone relatively well (take heart Donna - it really wasn't too bad, and I don't think it will be).
But if I am honest, I am still scared of the future - I overheard an elderly lady at the clinic today say that she no longer wore her lenses because she couldn't handle them - so that worried me; I'm not getting any younger! It would be good to get the views of people who are eg now in their 60's & 70's and how they cope. But do we have any members of that generation?

One other point that I raised with the lens fitter at Moorfileds today - I explained that when I got my diagnosis in November absolutely NO-ONE in the clinic explained what it was, (I didn't even know how to spell it) or what it might mean for me. There were no leaflets - absolutely nothing. No-one mentioned this Support Group - but thank goodness I found it ! I asked her today to make sure that if she saw any patients in future with KC that she refferred them to the support group and the poster which is now nicely laminated and back on the wall!

Donna and Louise - I've just seen your very recent posts whilst I've been drafting this and yes I've had panic attacks at 3/4/5 in the morning worrying about things. Louise - we must start to lobby for more support - you are right - aprt from this group there just doesn't seem to be anything else out there, nor an understanding of the condition. We must fight to change this. The next KC conference sounds like a good place to start.

Pat

[donna]

I agree with you Louise and I think it is a subject that needs to be talked about, there have been time when I feel very depressed about my future and I only found out I have KC in december!

[Louise Pembroke]

Thanks John I completely missed that! Needs a separate username/password right?

I agree with you Pat/Donna, I'd really like to hear from people in their 70's too, and the group is great but only if you know about it!
There needs to be a leaflet with info and the group address given at diagnosis at hospitals. This is something we could easily do, draw up the leaflet, it's just the funding of the leaflets for eye hospitals.

Then the offer of more information/support with progression, again I'm still not sure that eye hospitals are aware of the level of distress people experience. Apart from us being offered support as and when, I also think more user involvement in the training of optometrists/ophthamologists would help.

[GarethB]

Louise,

Because it is a members only area, the username and password is printed on the back of the news letters we mail out to those who register their details with Anne.

[Louise Pembroke]

Thanks Gareth!

[Vic]

Yes, I get scared by KC too, and the uncertainty of the future. I too was diagnosed by my optician and told ‘not to worry’, although having asked the inevitable ‘will I go blind’ was answered with ‘no but one day you may need a corneal transplant’ which without any other information about KC, came as a rather extreme bombshell as I was only 16 at the time. I always felt very alone with it in the first few years after I was diagnosed as had no real information and even google didn’t reveal very much back then (8 years ago). I experienced a lot of anxiety and panic about eye stuff.

I think as a medical student, one thing that I frequently see, in all areas of medicine not just ophthalmology, is... for want of a better word, a ‘complacency’ by medics, in the sense that for them, doing something very specialist every day of their career like endoscopy or explaining chemotherapy or giving a patient stitches - medics often get immune to the anxiety that can be related to a certain procedure or piece of news. For them it is a daily occurrence and you may be the tenth patient they’ve removed stitches from that afternoon - but for that individual, that is a new and potentially frightening / anxiety-provoking / even just plain unknown procedure. What is routine for them is not routine for us, and sometimes they can get quite far removed from what we as patients experience and feel about it. Of course there are many exceptions, there are many wonderful medics out there who take a lot of time and care and do appreciate the anxiety that can arise from certain things, but I think sometimes health professionals becoming ‘immune’ to fully appreciating the anxiety that their every day work can cause is definitely a contributing factor.

I had a difficult experience when I was trying lenses for the first time when I was 17. I was extremely anxious about it and very frightened, yet at the same time I wanted to try it and succeed in order to be able to get a much better acuity than I could with glasses. The optometry dept were aware of my anxiety but also my determination to want to try them. Yet because I found it hard, they ignored the fact that I wanted to try and persevere and interpreted my fear and anxiety as reluctance. When I went for my teaching session I tried and tried to get the lenses in and out for about 20 minutes. The optom got extremely frustrated with me and eventually called in the other 2 optoims which just ended up with an even more fraught situation, me trying to do it to an audience, and me crying and having a panic attack and wishing the ground would swallow me up. I did persevere with them for a month, until I had to go to eye casualty one day as I’d somehow rubbed the epithelium off one of my corneas, at which point they wrote off lenses for me. I subsequently was copied on a letter sent from my ophth to my GP to tell him that I had ‘really failed with lenses’ which just made me feel dreadful. Now, I am still very fearful but I find it extremely hard to articulate or show that fear as I am worried that once again it will be interpreted as reluctance and failure. Yet it is very possible to want something and yet be scared of it at the same time, the two feelings are far from mutually exclusive.

Looking back now, I am told that my first experience of and reaction to lenses was an entirely normal one. Hindsight and the shared experience of others is a wonderful thing - at the time I was 17, on my own, with no experience of what ‘normal reaction’ was, no experience or information about the condition. To have had someone who could have given some reassurance and to have had my anxiety and fear acknowledged and appreciated would have made a big difference. My fears about the future have always also been based around the fact that to be a medic I need 6/9 vision, which does pile the pressure on and now and then I do experience periods of considerable anxiety and panic, and nightmares. When and for how long I will achieve 6/9 is an unknown quantity. I am trying lenses again in 2 weeks’ time, for the first time since that experience at 17. I am determined to get on with them and make it work this time, but there does reside that background ‘what if’ fear, and knowing that my glasses aren’t sufficient to meet my medical school’s requirement is a big fear. I will have to go before a fitness to practise committee in the not too distant future because of that.

Like Lou said a lot of the time that anxiety and fear has to be shelved as best as it can be in order to get on with life but at times it does build up and it can feel frightening. Yet finding this group last year, and the wealth of information, expertise, experience and solidarity it gives is indeed a huge blessing and support.

[John Smith]

Thanks, Vic, for a most heart-warming post.

It upsets me that as such a young girl you were treated so badly. I only hope that with Louise's support you will get through this fine. If you have difficulties removing RGP lenses, be sure to ask for a rubber sucker to help remove the lens cleanly.

I also applaud your attitude; and I sincerely hope that you remember it when you're a qualified expert consultant yourself - I'm sure that you'll do everything you can to put your patients at ease.

All the best for your appointment!

[Louise Pembroke]

Vic's story clearly illustrates why we need to talk about this and bring it to the eye communities attention.

[Lesley Foster]

I get extremely frustrated with my KC. I get annoyed because I can't see clearly, I am unable to resort to wearing glasses to give my eyes a break now and again so I probably wear my lenses a lot longer than is good for me.

When I had my corneal lenses there were many things I wouldn't or couldn't do because they had a habit of falling out at the most awkward times and then hubby would spend ages looking for them, he usually found them which was just as well because he would moan about the cost of replacing them, once I lost 3 in the space of a couple of weeks and at nearly £100 a lens it proved an expensive time.

Now I have my sclerals and don't have to worry about losing them but now I am finding my vision is getting worse which means I will have to stop drivng which means I have to rely on other people and I have lost that bit of independance that I had. I can't read as much as I used to and when I do it takes so long and worse of all I can't read when I go to bed because I will have to get up again to remove the lenses. This in turn makes me even more frustrated and depressed, it's a vicious circle.

Even though family and friends are supportive it is difficult for them to understand how I feel and difficult for me to explain what I can and can't see so I am grateful to be able to come on to the forum and be with others in a similar situation. It's nice to know I'm not alone however much I feel I am.

Thanks you guys for being here.

Lesley.