A Note for Doctors (judgemental ones)

I have noticed that some doctors are judging me. Probably it was always like that. To hear kind words is uplifting, but it is the nasty comments made by some unkind doctors that stick in my mind. The recent ones have been:

• wears sunglasses, take them off (less light helps reduce migraine pain caused by light)
• does not work therefor must be on benefits (I have never been on benefits. I am supported entirely by my parents. If I had been treated for the pain immediately I would be in university now.)
• sleeps too long/wakes up too late (I am always on time for medical appointments.)
• 'cannot be from Britain because has accent' so must 'tell the truth about origin' (this was really weird to hear. Would like an explanation.

So I have something to say to them.

If you make judgements about me and say unpleasant things there will be consequences. Not for you, you will be ok. I will be the one who will hear echoes of your voice for days, weeks, maybe even years afterwards. It will impact my health. So by saying what you say, you automatically consent to being responsible for causing me to suffer.

Before judging me for how I am coping with my pain (trying to get as much sleep as possible, staying at home, wearing sunglasses…) think about how it is that I am still here. The exit is clearly marked. I could have left long ago. I am still here, still trying to make the best of these defective genes and keep them alive for as long as they will last. I haven’t had any help from doctors to make my life liveable. The things that were treated were things that eventually lead directly to an exit. So I can see that you care about a person remaining alive. But purely existing is not enough. You think of pain as something unpleasant but not life threatening. It is life threatening when it makes a person want to leave willingly, rather than have to bear it. Have you ever thought about what my life is? Be amazed that I am still here. I am in a pit. Please don’t stand there judging. Instead pull me out.

My Progress

I have changed some things since my last post. I have been constantly reminding myself that thought I feel pain, I mustn’t suffer. I can’t help but feel pain – it is in my genes. But I can choose to suffer or not. I choose life. I choose happiness.

I’ve also been doing back and neck exercises, despite the pain, to prevent stiffness which makes the pain worse.

It is good to have something to look forward to. We’ve had some days out and I’ve gone to each one that we planned. Previously I might have stayed at home on some occasions because of the pain.

Mindset does make a big difference. If some people have learnt not to feel pain we can do it too. I have made a start on this journey.

Help for Chronic Pain Sufferers 4

I have some bad news. I received a letter from Department of Health (1 month after writing to them). It contradicts what is written on the NHS website. I would like to share some quotes from the letter as it is not confidential and concerns all of us.

"...the Government has no current plans for a further review of the list of medical conditions that confer exemption..."
Really? But on the NHS website I have linked to it clearly says that the government are reviewing the list of conditions. I refer to the very bottom of the page:

So what is the truth? Are the government reviewing the list or not? It is very confusing when one person says one thing and another person says another.

"People on a low income can seek help under the NHS Low Income Scheme, which provides help with health costs on an income-related basis."
I think that there are some misconceptions in government. This is not what these things are about. Pensioners get winter fuel allowances, free eye tests and free bus passes regardless of their income. Millionaire pensioners get these things. They are not income related. The same with certain illnesses. People with those specific illnesses get free medication regardless of income. Millionaires will still get their medication free if they suffer from those illnesses that are listed. This means that the point is to compensate a person who is ill. People who take care of their health but are ill should be compensated for what fate took away from them. We had no part in what happened to us. We did our best. When the problem is genetic, or just appears, the person can do nothing to stop it.

"The Department will continue to look at options for creating a fairer system of prescription charges and exemptions that takes into account the overall NHS finances."
Is that an indirect way of saying that people will have to pay for charges because of the deficit? What happened to ring-fencing the NHS from spending cuts?

A very disappointing reply. Again we are on our own. It is always us being cared for and supported financially by our families. But what about people with no family? We with chronic pain can expect nothing from society.

Click here to view my original post about Medical Exemption Certificates.

Help for Chronic Pain Sufferers 3

I have received a reply from my local MP saying that the matter has been taken up with the Health Minister (the possibility of changing the requirements to qualify for a Medical Exemption Certificate). Hopefully we will see some changes but it is always difficult for minorities, especially disadvantaged minorities, to be heard and considered.

Original post here and my previous follow-up here.

Help for Chronic Pain Sufferers 2

This is a follow on for this post. It seems that the authorities are not currently replying to letters and are, at this stage, collecting information on conditions and evaluating which they will include in the list and which they will not.

If you are not receiving any help at the moment please visit this page (for UK residents only). Scroll down to the bottom of the page to the last question in the list.

Q. Can I apply for a Medical Exemption Certificate if I have another long term medical condition not listed?

A: Only the exempting medical conditions listed on the FP92A are eligible at present. The government is currently reviewing other long term medical conditions.

This was one of the places I wrote to. It is necessary for our condition to be recognized and added to the list. We need as much help as we can get. Unfortunately I do not have any information about help in other countries.

Help for Chronic Pain Sufferers

I have found out recently that people with certain chronic conditions can get free medication. But chronic pain is not listed. It seems strange that one person is fed while another starves. Are we not all equal?

Someone is born healthy. Someone else is born ill. It was not a choice. Surely there should be some compassion for people who, as far as we know with the current medical achievements, will be in pain our whole life. We will need to pay what is quite a large sum, every year until death, to get medicine that we do not take by choice. What is even more unfair is that people with chronic pain are less likely to be able to work to pay for this. So the person who is not likely to be as wealthy anyway, now has to lose even more money to pay for medicine for a condition that we did not choose to have. Other chronic conditions have, rightly, been added to list. It is about time that chronic pain was acknowledged alongside them.

I have written to some government bodies to ask that chronic pain be included in the list of chronic conditions for which people can get a Medical Exemption Certificate. I will keep everyone updated as to how it goes.