"XXX and I would like to catch-up with you to see where things are standing at the moment."
"If you would like to, you are welcome to bring a support person. We just want to make sure that strategies are in place to get you through the year, whilst keeping yourself and your patients in the clinical setting safe."

Oh crap...I thought I had been spared this and truly this year has been going much better than last-or so I thought.

Being summoned to a meeting with these two people (associate dean and undergrad dean) is not to be taken lightly and as I thought I had sorted out the mishap that happened just before Easter, I wasn't expecting it (though I was hiding).

Jo came with me (thank you a million times) and it was because of her presence that the meeting actually had a positive outcome (and we both agree it was a pretty intense meeting). I am so afraid of them deciding I am too much of a liability that I haven't been able to tell them the whole truth. I think at the beginning of the year I just said I had crps but didn't even explain how it affected me.

Jo 'laid it on the table' how it affects me on a day to day basis, how its unpredictable, how its physically draining but also that I can recognise when I'm not at my best.

One of their biggest concerns is safety and potential threats to safety; patients, staff members, other students and mine. I have been known to fall, to faint and apparently other students have had concerns about leaving me on occasions. Staff are watching me very closely in classes. I totally understand and I know what a big responsibility the school has in this respect...I just think that its so unfair that crps is doing this to me, creating this problem.

They wanted my permission to inform staff who would be in close contact with me and then it was decided I should put what I wanted them to say on paper which is fair enough. It was suggested something like "X has a health condition and it can affect her in XYZ way."

I got home and started thinking...I am sick of hiding, sick of pretending, and up until now have been a bit scared to say things to tutors etc about how I'm feeling or where I'm struggling. I dont want to do this anymore and its much better that people know in the beginning so they can help. According to them, as everyone who teaches is a health professional themselves they should be able to understand (I really hope so) so by being informed it should potentially make life easier all round.
I thought, IF people need to know anything, then they are going to know the TRUTH...not just a tiny part of it. So I wrote a letter...it has turned into a page, but thats not much really. I am going to give it to the Associate Dean this morning and explain that I want people to know the truth. So, anybody who she deems it necessary to inform, they are to receive this letter from me. Hopefully I can feel more comfortable going to them and asking for help or saying that I don't feel so good and it will stop me pushing myself to the limits as I have been up until now.

I'm not certain whether they are going to be ok with this but I hope they are...its how I want it done if its to be done at all.

I just hope that its not used against me or creates more problems.

I also recognised for the first time, my attitude towards any problems I have is not the right one, something happens or I find something difficult and instead of looking at it practically and thinking about how it could be made easier...I tell myself its my problem and just deal with it. Now that they have specifically asked me what they can do to help I have started thinking of practical things they could actually do to help me and if they really do want to help (and I think we both agreed they do seem to want to) it will make life so much easier!

Oh, and heres the letter I wrote...

To whom it may concern:

You are getting this letter because you will be teaching me on some level this year and I would like you to know a bit about me in order to make the year flow more smoothly for everyone concerned.

I have Complex Regional Pain Syndrome (CRPS, formally known as Reflex sympathetic dystrophy) which I am hoping you will know a little bit about. I have constant pain, allodynia, hyperalgesia, burning and freezing cold pain as well as muscle cramping, stabbing pain, colour changes and abnormal nail and hair growth.

I currently have these symptoms in my right foot, leg and thigh, with mirroring symptoms showing in my left foot and ankle. This is making some everyday activities a challenge for me. It can affect my ability to stand still or walk for long distances, concentrate for long periods of time and think quickly. I find long classes and hours with no break tiring and not easy. Sometimes I feel nauseated due to the pain and fatigued due to the chronic lack of sleep as CRPS also affects the limbic system, causing sleep and short term memory problems. I do not tolerate heat very well and this can cause me to feel very hot and feel faint.

I am on a combination of drugs to help with the pain but these also have side effects including concentration and memory problems and I tend to loose my voice due to having a dry mouth (so I am always having to sip water). I have good days and not so good days although am unable to predict when these may occur, but I have learnt how to recognise the signs that mean I am not so good and when I need to take extra special care.

Despite all this, I really want to make it through to graduating as a physiotherapist. I do work hard and am putting a lot of effort into showing I can do this and I believe it is still an achievable goal for me. With the support I need and that the school is offering me, I think that I am still capable and that I will be able to show I can meet the competencies required.

I know how important patient safety and other’s safety is and the responsibility the school has in relation to this, so it is important that everyone who is in charge of me knows my background in order to offer any support I may need. I don’t want special treatment and I am scared about how this is going to affect the way I am treated in regards to ability, but I do understand I have a health condition that requires people to know about it. And because you are informed I will feel more comfortable asking for help or letting you know if I am feeling unwell.

Yours truly,


Susie said...

You go girl!! That took a lot of courage and strength! I'm very proud of you and looking forward to you joining the "PT world"

Lisa Moon said...

Oh, WELL DONE, my dear! I'm VERY proud of you!

I know how scary it was and is to admit to people how things really are - especially as a student...

YAY and YAY again to Jo, too, for helping make crystal clear what your reality currently is in no uncertain terms. What a great advocate and brilliant friend you have!

I know you're worried about how this will affect you, but honestly, I think it will make things EASIER in school; after all, people now know more what you need. For example, if you were hard of hearing but kept it a secret and were doing a good job of reading lips, etc. people might wonder if you were a snob or had an attentional problem if you didn't respond when called upon by teachers or friends - if that makes sense?

You have the right to equitable treatment: this does not mean equal treatment as you might need special considerations (such as being allowed to change positions during a seated exam or lecture) but which are *fair* if not exactly *equal* to everyone else. It is equitable - meeting different needs as possible. You would have no problem with someone who used a wheelchair or, again, someone with a hearing impairment having a translator, right? Of course not. There's no reason you are any different - you're still worthy, skilled and will be an excellent and well-informed PT... WITH the right supports you WILL get through school!

Keep working on that honesty; don't hide your truth behind politeness or the urge to not want to be noticed. Where it's needed, let people know and do NOT feel ashamed because there's nothing to be embarrassed about!

Once again, I'm SO, SO proud of you (and Jo!!!)!!!

Keep it up, hon!

Much Love,

Alessea said...

Thank you both so much. I got told as I handed over the letter that it took courage to do so I guess I agree though at the time all I wanted to do was burst into tears...

Susie, fingers crossed eh? The PT world has a scary undergrad dean hurdle to get passed yet.

I have to work on my hiding things...but I am sure I will get there :)

SailLttleboat07 said...

I am so proud that you did this! It takes a ton of courage- I have been trying to make it clear to my teachers- but I am too shy/nervous about what they might think and haven't been able to do it for a while...but luckily they are pretty understanding of my garbled explanation...
To a very courageous person- I am so glad that you were able to do this... People need to know what we are going through when some days we just look like everyone else- like nothing is wrong well really the burning and the pain is about to make us scream...