To whom is may concern

I have experienced some pretty awful hospital appointments in my time on the road to diagnosis, today's post though is prompted by reading an account of an appointment that another HMS sufferer experienced. It made me want to channel the emotions I have had after my own appointments into one letter 'To whom it may concern' by way of expressing what it is like to live part of your life in a doctor's office waiting to get diagnosed.

To whom it may concern,

Firstly I would thank you for seeing me today. I understand that with a growing population and a shrinking budget doctors and nurses within the NHS are put under an increasing amount of pressure to perform beyond their means. I cannot imagine the stress you find yourself under; targets, budgets, patients, you are being pulled in so many directions it must feel some days that you will spilt at the seams.

Early mornings and late nights top and tail long clinics, everyone wanting a piece of you. I sympathise and admire you're commitment to the healthcare sector.

I would like to tell you a little about my life now though, if I may. I wake most days in agony, sometimes the pain is so wide spread I cannot pinpoint it. There are days it is so large I think to myself "Can it really be this bad?" but of course I know it is. I can feel it. It makes me feel lonely in a way I never have before. It's not a physical loneliness. It is a loneliness shrouded with doubt and suspicion, one that means you never really want to give voice to the pain, if I have trouble believing it myself  how can I possibly expect anyone else to believe in it? By sharing it with you I have been incredibly brave.

Then there is the ever growing list of symptoms that I experience, so abstract that I wonder somedays if my body was just 'made wrong'. I see no link between them and yet there seems to be so many!

A day doesn't go by when I don't envy people who have their full health. It's difficult to look well and yet feel so unwell. Trapped with a healthy mind inside a broken body.

That's where you come in. My doctor. I don't expect you to have all the answers. I am aware a doctorate doesn't come with a magic wand and I don't resent you for that. What I ask is that we can be a team. I promise to bring specific thought through lists of symptoms, I won't bombard you, I will try to use our time together effectively. I know I am one of many and I don't expect to be treated like the only one. All I ask in return is that you see me as a person not a time slot, That you recognise how scared I am that I will never get to the bottom of this, that this is it. My life. I will share my honest thoughts with you about what it feels like to live with an undiagnosed or invisible disease if only you would ask.

If you feel like you cannot help me yourself then please refer me to somebody else, please don't dismiss me. To you I may seem like a mix up of several 1000 piece puzzles scattered on the floor but to a colleague I may be one complete 5000 piece puzzle of which they know how to piece together.  Please do not deny me the opportunity to meet 'that' doctor just because you do not understand how to piece me together yourself. Please don't let that lack of knowledge turn into the road block between me and the attention of a consultant whose speciality my disease is and if we don't get the consultant right the first time please don't give up on me. Please let us try again.

When you dismiss me and rush through our appointments, if you tell me that I am not feeling the way I think I am and that this is all in my head what you don't see after our appointment is my world fall apart. I trusted you, I came to you for help and you cast me out. I found a door and I was brave enough to knock, I even took a step in when the door was opened to me but you slammed it on me and now I feel more alone in this then ever.

I leave disheartened, deflated, exhausted, confused and desperate. I'm not telling you this because I am angry with you, I cannot believe that a person who chose to go into a profession where their key role would be to help people would want to hurt someone but I did leave today hurt and if you're the person I think you are then I think that would trouble you.

I am the one that wakes up everyday with this, that lives day in day out with it. Fundamentally you just have to be the person who believes in me. The way that I believe in you when I book an appointment with you. The rest they say...is history.

Yours faithfully.